Am I A Bad Parent?

Our adoption journey has given me the privilege of meeting and speaking with many parents. Due to our unique circumstances, it is often those parents who have children with FASD or those who's adoption's aren't working out, often due to safety issue's, with whom I have the privilege of sharing our story and hearing theirs in return.

There is one question I am asked every single time. Sometimes the person asks in a voice choked with tears, sometimes the question is laced with fear and sometimes the question is asked so quietly I can hardly decipher what was said. The question is this, "Am I a bad parent?" My heart hurts for these people because I am deeply familiar with that very pain. It is a question I often ask myself. On some level I know it isn't true, but on a deep fundamental level I can't help but believe that somehow my child's problem must be at least partly my fault. As parents we want to "fix" our children. We want them to be successful, to have the ability to make good choices without their trauma baggage weighing them down. We run ourselves ragged in an attempt to aid them on their healing journey, but sometimes healing doesn't come. At least not in the ways we had hoped and dreamed of when we looked into the future. When failure is more common than success, we as parents have a tendency to believe that somehow we must have failed.

We, like most families who began foster care over ten years ago when there was very little taught about trauma, believed that we could heal the hurts in the hearts of the little ones who came through our door. We somehow thought that love would be enough. How many times have you heard that quote? How many times have you heard, "Well if you would love them more," or "If you would love them the same as you love your other children," whatever that is supposed to mean, "They wouldn't have these problems" Somehow the world has gotten hung up on, "Love is enough," when it comes to helping hurting people. Folks, I am shouting from the roof top's, "LOVE IS NOT ENOUGH!!!" Anyway, 10 plus years ago we believed this from the bottom of our hearts. We didn't have trauma training, and the words, Reactive Attachment Disorder weren't even in our vocabulary. We tried to take hurting children and love them so much that they would just have to love us back. At the time the idea sounded logical, in hindsight it was anything but logical. You know how well that theory works, right? It doesn't. And so we began to flounder. What do you do with a child who is terrified of love, or feels he is unlovable? We didn't realize that such a thing was even possible, so I began to think, "It must be me. I must be a bad mom." And the seed grew and grew. That seed was watered daily with examples of why I was a bad mom. My child refused to do anything that I asked of him. As a preschooler, he would go hungry rather than eat the food I made, while happily chowing it down if someone else made the meal. How do you deal with that?

You think of the urine soaked floors in your house, the holes in the walls, the times you screamed into your pillow because you so desperately needed to release the pain building in your heart. The items found stashed behind your child's bed, the misunderstandings with her teacher, the fights your son was involved in because his brain damage means that he doesn't understand cause and effect. And then your mind goes on to think of how well your child can present in public. You think of the times your child raged and threatened you until you arrived at a friends house, whereupon the threats stopped and a smile appeared on his face. People greet your daughter with hugs and she accepts them, but when you try to hug her she either accepts the hugs but then turns around and destroys something that had sentimental value to you, or she grabs a handful of skin and pinches you as she hugs. And you think, "I must be a bad parent or my child wouldn't act this way."

You can't talk to anyone other than your child's therapist about the things that happen in your home because it sounds so absurd, and in public your child looks nothing like what you experience at home. If you do venture to speak up you hear one of three things:

 The ever famous, love them more

 Discipline more - he just needs a good spanking!

Don't worry, my child does that all the time.

You know loving more doesn't work for your child....although from those giving you the advice, it seemingly works for everyone else's child. So you internalize the idea that you must be a bad parent, because this is not working for your child. But we forget that the people offering this advice often have no experience with something that plays a huge part in your child's behavior: trauma. Our hurting children need love in mega doses, but love itself is not enough.

Discipline more. That is such a lovely thing to hear when you are at the end of your rope. When parenting children with trauma, brain damage and/or prenatal exposure, more discipline is rarely the answer. Consequences seldom have the desired affect and what those offering this bit of advice fail to understand is, our children have already gone through horrific circumstances, a consequence likely won't make one bit of difference. However we have learned to take advantage of natural consequences when applicable. If I tell my child not to slam the door and he does anyway and pinches his finger, there is a 50/50 chance he won't slam the door the next time. However, when you take the brain damage from prenatal exposure into consideration, it is anyone's guess if he will remember not to slam the door when he goes through it 5 minutes later. So you feel like you must be a bad parent because you can't get your child to stop slamming doors....or whatever behavior that you child is currently struggling with.

Don't worry, my child does that all the time. This one used to drive me crazy. One therapist explained it this way, "Yes, what your child is doing is typical. What is not typical is the length, severity and intensity of the action." All children have meltdowns, but typically not for hours at a time, over the most minor of circumstances. Even knowing this, it can leave you feeling like a bad parent because your child's actions are getting on your last nerve and according to your friend, this behavior is perfectly normal!

You feel guilty for resenting your child's behavior, this is trauma/brain damage based after all. Your child can't help how he is affected by his life experiences, and so you go back to the, "I must be a bad parent, because what kind of a parent would get so frustrated with their child?" The guilt we heap on ourselves is tremendous.

You feel like a bad parent when sitting in a new therapist's office and she asks for your child's strengths and your mind goes blank. You know your child has strength's but all your weary brain can remember is the pain and anguish of each and every day. 

And if you worst fears become reality and your child is no longer safe in your home and you know that due to circumstances unique to your family and situation, he never will be safe. Despite your best effort's you know cannot keep everyone safe 24/7. Decisions have to made, decisions you didn't even know were a possibility before you entered the world of trauma and prenatal exposure. Your heart breaks because you must be a bad parent if you can't keep your own children safe. This is the point where most parents crumble. This is not what you had in mind when you signed up for this journey. You wanted to aid in healing hearts, not causing more pain and hurt in the lives of your loved one's. All the guilt, pain, shame, trauma, distress and chaos of the years washes over you like a tidal wave and you wonder if there is hope for your loved ones. Failure looms big and black in your face, you feel condemned, judged and left to wither away in the face of this pain.

But remember you are not a failure!

-You kept your child safe to the best of your ability.

-You lay beside your child as he screamed out his inner torment, for which he had no words. Even though you couldn't make it better for him, you were there.

- You sought out one professional after the next, searching for help and healing for your child.

-You bore the brunt of deep emotional wounds, inflicted on their tender souls long before you came into the picture.

-You fought for them as long as you could. Even if your child has crossed that line, the line where she is no longer safe in your home and you need to look into other options; remember love means doing what is best for your child and the rest of the family, even if it tears your heart to shreds.

-You loved them with all you could, using your resources minimal though they may have been, you wore yourself out trying to be everything for your child and just because you were not enough, does not mean you are a bad parent!

When A Special Needs Parent Fall's Into A Hole

I had to chuckle a little when I saw this quote come up in my FB feed. I think it accurately describes what we special needs parents feel at times. Our lives are so complex and so confusing that those who haven't walked this road must wonder at us sometimes! 

Even as I chuckled, I had to admit it was 100% spot on. For many of us, our children's disabilities are hidden and no one knows what goes on inside the walls of our homes. Explaining a complex, invisible disability is hard. I often find myself lacking the words to adequately convey my child's needs and end up sounding like an over protective mom.

As you all know, taking a day off work won't fix the problem, it might not even help the problem. If you could take ten years off and still receive a paycheck so you could be with you child 24/7 you would most certainly make some progress.

Doctor's are a necessary part of this journey but too many of them don't have the time to spend individually with their patients to really learn what is happening. It is much easier to prescribe a medication, send the child home and have the parent call if there are problems. And trust me, our prenatally exposed children are so complex that there will be problems. The parent has to decide if they are giving the medication a fair trial, if the child is reacting to the medication,  if it is due to a previously unknown trauma trigger, or could it be that this new med doesn't mix with the other medications he is taking? The doctor may have answers or he may not. Prenatal alcohol exposure means our child's brain may react in any one of a hundred unusual ways. Then there are the new behaviors that pop up and you have to figure out if the new medication is causing it, or has the medication helped relax the child enough that he is able to expose another layer of trauma? Other doctor's take one look at the child and say, "He is fine, you just need to be firmer with him." Still others say, "He is too young to be exhibiting these symptoms, are you sure that is what is happening? Perhaps you are only imagining things?" There was a time we had so many doctors, therapists and medications on board that things were absolute chaos. We ended up eliminating them one by one and starting back at ground zero to try to make sense of things. It would have been so nice to have a professional who truly understood our child(ren) and would have sorted out the mess, but unfortunately there wasn't anyone with those credentials who could help us as we didn't meet certain criteria and/or hadn't gone up the necessary rungs of the ladder in the correct order so we didn't apply.

Behavioral services are rife with loophole's. You think you have your I's dotted and your T's crossed only to find out that they can't help you due to budget cut's, time constraint's, age, diagnosis etc. etc. It is maddening to fill out reams of paperwork only to discover you have once more reached a dead end. They push you off to another department or another colleague and, I suspect, breathe a sigh of relief that you are no longer their problem.

Nobody has money for the services our children need, I admit their diagnosis cause them to be a bottomless bucket of needs. It isn't their fault, they didn't ask for this, but the fact remains this is the reality the child/parents face. The supports, schooling and therapies our children need are astronomically expensive, leaving family struggling. Parents see how certain things could help their child, but can't afford them. 

There are always charities who help with such expenses, but there are more needs than charities. Applying for charity aid requires more paperwork. More explaining, more defending and more questions until you wonder if it is worth it, beside's there is little hope that you will actually receive the help you need because there are thousand's of people applying for aid.

I have found that knowledge of the prevalence of FASD is still new enough that there aren't as many services available. If my son had autism we would be able to access many services that are currently beyond our grasp due to his diagnosis. 

Then come your friends who get it without you having to explain a thing. When you simply say, "It's been rough today," they smile, give you a hug and reply, "I understand," and drop what they are doing to help you out. And it means so much because you know that their plate is every bit as full as your own. Having friends and family who care is vital in providing the courage to get up, dry your eyes and try again.

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*I couldn't find who wrote the above quote, but if anyone knows contact me and I will give credit to whom it is due.

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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Changing Ones Perspective - From Stressed To Blessed

Today was pretty awful, no change that, it was spectacularly awful. The girls were scrapping before they were even out of bed. Kiana has been dealing with some major anxiety since I got sick. She just knows I am going to die, so she has upped all her survival skills. Think lying, manipulating, pouring on the charm with people outside the family... All things that rear their ugly heads only when her past trauma comes knocking. She told Dean she is treating me so badly so it doesn't hurt as much when I die. Dean reminded her that no one who loses a loved one ever regrets the love and kindest they showed that person while they were still on earth. Last night we had a long chat with Kiana and I thought we had things cleared up. I should have known better, rationalization is not something the traumatized brain responds to.

After a chaotic breakfast we settled in to do our school work, and Joseph promptly flipped out over his math. He successfully completed third grade math last year, so I naively assumed he was ready to progress onto fourth grade. He wasn't, and math has been the source of many chaotic moments. Originally I blamed some of it on "summer brain," but in reality it is more than that. Due to FASD, he really needs to be in school year round to retain what he has learned. I cringe at the thought however, because I know full well how he would feel about that. Anyway, the first sign that something was wrong were the huff's n sighs coming from Joseph's corner of the kitchen table. Then he began verbalizing his displeasure and it went down hill from there. I realized his brain had gone too far down the FASD trail to do math, so I gave him another subject, something that sometimes works. He was having none of it though, because he wanted to do math, until I gave him the book, at which time he didn't want to do it. Books, pencils and words were sailing across the room, realizing I couldn't calm him, I put him in the shower fully clothed. For some reason, cold water will stop a meltdowns in it's tracks, he will go from screaming, kicking, hitting and throwing things, to smiling and telling us about his latest idea. Often he will stop mid scream, give us a big smile and that quickly the storm is over, except today it wasn't . Nothing helped so I put him in the pool where he swam several laps before calming down. Once back inside though, chaos resumed so I sent Dean a S.O.S. via text, essentially telling him we need professional help. He called me and suggested I put Joseph to bed with his stuffed puppy, Sport, and his weighted blanket. I did and peace ensued..... Until Kiana kicked up her heels.

Poor girl, in addition to her anxiety I am convinced her PANS is flaring again, or is it hormones?!? She melted down with a show that put Josephs meltdown to shame. Her high pitched shriek told me this wasn't just an, "I am upset with Mom," fit, it was brain inflammation. After trying all my tricks, none of which worked even the slightest bit, I took her out to the pool and had her swim laps. I texted Dean, "same pool, different rager." 

Joseph can't yell while swimming (the children can easily touch bottom, but it takes all his concentration to swim) big sister had no such problem, and the woods, and my poor ears, were ringing. I sat on the deck praying, asking God why? Why do my children have to suffer brain damage? Why do I have to home school? Why do they have to constantly face new threats to their security? At the same time I was thanking God that we live in a long drive and all our neighbors understand the circumstances surrounding the epic meltdowns that occur.

Eventually Kiana calmed down, we had lunch, Joseph was smiling again, and it was finally time for our quiet time. I sat down to sort through my feelings, read my Bible and pray because while the storms of the morning had calmed, they were still hovering on the horizon and I knew I needed to get myself grounded. I was helping Lia work through an issue when the dog started barking. A vehicle was parked in our drive. The driver had a stack of documents on the seat and he was clearly dressed up, funny what you notice when you are on high alert,  my first thought was, "Someone heard all the screaming and reported us!" Now who is being irrational?!? I quickly went over the things to remember even CPS comes knocking and typed up a text to Dean that read, "If I call you in the next moments answer ASAP!" Suddenly our answering machine picked up and I heard, "I am ______ from pest control, I am sitting in your drive, can you please get your dog?" I suddenly realized Kobi had been frantically barking all this time. I felt my heart stop it's frantic beating and all my frustration of the morning melted away. Suddenly, my overwhelming morning wasn't so overwhelming. The rages, hurtful words and actions no longer bothered me..... after all, CPS was not knocking at my door and in light of what I feared moments ago, I can handle whatever my little people dish out as they sort through trauma and deal with their limitations due to FASD. 

Perspective makes all the difference!!!

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When Mom's Brain Is MIA -Living With FASD

My blog posts have been few and far between these last months. I was dealing with health problems that had doctor's stumped. I reacted to medication's, spent days with no energy, and as the days and weeks wore on, felt a depression settle over me because no one could help me. As the days passed I was less and less in tune with the world around me... and the children felt it.

Having a mom who's brain was MIA, triggered trauma's that hadn't raised their head in a long time. Everyone know's that trauma can hinder a child's ability to self regulate, but it wasn't until I was floating adrift myself, that I realized how much my children rely on me. As much as I tried to appear strong and in control on the outside, I couldn't hide how torn up I was. For the past ten years, we have worked closely together to overcome the trauma that was doing it's best to undermine the foundation of trust we struggled to lay down and keep in place. That close interaction is absolutely necessary when healing from trauma, but it also means mom can't hide behind a fake smile. My children can read me like a book and even though I reassured them that I was okay, deep inside they knew I wasn't and it shook them to the core.

Old trauma's that I had forgotten about, came back with a vengeance. We had wet spot's on the sofa, eating, eating, and eating to drown the feelings of panic, meltdowns, the lying was through the roof and oh, the tears and manipulation! I pleaded with God for answer's to my health problems, if not for my sake, then for my children's. Dean and I carefully guard the foundation of trust that is being built between us and our children. The little bit of trust we have gained is so precious to us, that we go to great length's to preserve it. Knowing it only takes a few minute's to undermine that foundation,makes us all the more cautious. But here we were, weeks into this ordeal and losing out more each day. I was desperate!

How do you reassure a child who has personal experience with mom leaving? I have been here as mom for ten years, but that doesn't mean I will be here tomorrow. This child guards her heart closely, it was hurt once, and she won't risk having it hurt again. We have been making some progress, but having mom sick did a great deal of damage to the fragile trust that was beginning to form. Someone said, "How she loves you!" It is true she does, but deep underneath where no one but mom and dad could see, was FEAR! And it was driving her to try desperate measure's. 

How does a child who has zero self regulation keep from falling apart when his stabilizing force is no longer there? The answer is simple: he doesn't. Poor Joseph spent more time getting lost in our house, losing his possession's, getting into trouble and hurting himself than he has in a long time. It seemed as though his brain literally couldn't function when he was no longer grounded.

How does a child who is facing the real (to him)  fear of losing another mom react? He become's angry, he starts testing you, he pulls away emotionally. When mom is sick, it is very easy to pull away as well because who has the energy for this kind of drama when you aren't feeling well?

The coming weeks are going to be challenging because a lot of behaviors and attitude's were left slide. Fear gained a foot hold in my children's minds and it isn't going to be easy to send him packing. I would love to hear how you regroup when stability has been rocked, when attachment has been challenged, when fears that were laid to rest rise again. I have to be very careful because just as my children react to a lack of structure, too much "bonding" scares them just as badly.

Here is a quote that sums up how scattered one child felt: "Where am I? I went back and I was right, but now I can't find where I am." 


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Finding Success In Parenting Children With Social, Emotional & Behavioral Disabilities - Living With FASD

We have many boundaries in place for Joseph. These boundaries keep him safe, help him thrive in a confusing world and if I am honest, they also help us hang onto our sanity during the rough moments. These boundaries are pretty much unspoken. His sibling's don't look down on him for things like, remaining in line of vision, because we don't relate to them as a punishment for bad behavior. Sometimes I can even forget how vigilant we are, until someone makes a comment or begins asking questions.

Recently a neighbor asked, "Is Joseph still around here? I don't see him outside very much." First, let me say that he does spend a great deal of time outside, only he is behind the house in his play area where this neighbor cannot see him. When she stopped by he was already in bed for the night, as he needs more sleep than his siblings. I explained that a 7:00 bedtime is what he needs to thrive, and yes, he is still here. "He needs Dean or I to help him self regulate, which is why you don't see him running into the woods to play by himself," I concluded. She was silent for a moment then said, "The poor boy!" I was a little surprised at her comment as she is very familiar with special needs similar to those Joseph has, but it got me to thinking. 

If you have followed my blog for any length of time, you know that I struggle with the whole boundary thing. Of course our entanglement with CPS over Braden's care did nothing to alleviate our fears, because once you have gone through an investigation, things look very different. You realize you simply cannot be too careful; err on one side a wee bit too far, and things will come crashing down with devastating consequences.

I had to remind myself, "What is my responsibility as a parent?" 

#1. Keep my child safe. If he will go with a random stranger at the drop of a hat, then I must keep him by my side. If he will do or tell anyone what he thinks they want to know, again, I need to be with him at all times. If he has zero self regulation, and will unintentionally hurt someone or push them beyond their comfort zone, what is my responsibility? It isn't his fault his brain is damaged in this area and no amount of talking, therapy, etc. will "heal" him. We need to provide safe guards to protect him from himself.

#2. Help my child succeed. People with FASD have many hidden disabilities, and weaknesses in area's that you or I don't even think about. It isn't their fault. Joseph is successful, when we provide the boundaries and safe guards to help him succeed. This means putting him to bed at 7:00 because he needs ALOT of sleep, without it, he completely falls apart and the whole family ends up frustrated. People often tell me, "But that isn't fair to him, doesn't he get upset?" Of course there are times when he grumbles about it, but over all, he is much happier if we stick to his routine, because he knows he feels better.

#3. Make my child feel loved. Every child needs rules/boundaries in order to feel loved, even though I am sure every child would adamantly deny it! When we force Joseph to "act like a 10 year old," he doesn't feel loved because he inevitably falls short of our expectations. If we parent him like a preschooler, he thrives and feels loved and secure in that environment.

As parent's we often struggle with the fear of failure, especially when parenting children with social, emotional and behavioral special needs. There are many parenting models out there, therapies, diets, supplements, and the list goes on, but at the end of the day who is responsible for the child's well being? The parent of course! If the child is still struggling despite all the intervention's you have put in place, you will naturally be tempted to feel like you have failed your child. Smashing yourself into the rocks of guilt, won't help you or your child, instead ask yourself:

- Is my child safe?

- Is my child thriving/succeeding?

- Does my child feel loved?

If you can answer yes to these questions, then you have given your child a great gift and you are not a failure, even though those who catch a brief glimpse into your chaotic, restricted, lifestyle would likely claim otherwise!

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From The Inside Looking Out - When FASD Is Hard To Explain -Living With FASD

I have recently begun following Beating Trauma With Elisabeth Corey  and love her many thought provoking posts and comments. If you are a victim of trauma. or parenting children with trauma, I urge you to check out her FB page. She works with adults, but her writings offer insight into why our children struggle in particular area's. As I have said before; FASD is a form of trauma due to both the prenatal exposure the child endured, and going through life with this particular form of brain damage is an open invitation for further trauma to occur.

When I feel frustrated with someone who obviously does not get Joseph's disability and through their interaction with him, are compounding the problem, I try to place myself in their shoes. What must the situation look like to them? Here is a child who's parents have obviously placed severe boundaries in his life, they also monitor his speech and actions,while insist on being by his side at all times. For all intents and purposes, the parents appear to be both coddling him while not allowing him to have a social life. When someone comes to me in what feels to me like a defensive manner, and begins questioning our parenting of Joseph, I am slowly learning that they won't be able to understand no matter how much I explain and I must remember that, "From the outside looking in, it is hard to understand."

The flip side is when you are on the inside looking out and you know if you could help people understand that you aren't being mean to your child, nor are you coddling him, you would have a great deal less stress. If only they could understand that you are merely providing the supports and boundaries he needs to both thrive and survive, and that if it were at all possible you would be only to happy to let up on them. I don't think you can explain how draining it is to keep a constant eye on your child, to think of the 101 things he could get into even though you have been super vigilant. Joseph has the uncanny ability to get into trouble or hurt himself, even when he is in line of vision. It is due in part to his lack of cause and effect, along with dysmaturity which means that while he is the size of a 10 year old, he is developmentally between the ages of 3-5. He is tall enough to reach the counter tops, the stove etc. but he can't be trusted not to turn on the stove or taste a mouthful of spices. 

How do you explain that while my son can speak fairly intelligently on certain subjects, he has no idea if a topic is appropriate, nor when it is time to discontinue the discussion. He will talk to you about any given subject for as long as you listen. The more you engage him, the more he talks and the bigger the fall out will be. How do you explain that interacting with my child causes him to become hyper vigilant without sounding like an over protective, paranoid parent? The brain power needed for each interaction, rapidly uses up the meager store he has on any given day. This means he won't have enough brain power to regulate his emotions, follow instructions, or even enjoy the remainder of his day. When he becomes over stimulated, his cortisol goes through the roof and he is unable to relax enough to sleep, resulting in still more tears. 

How do you explain the grief you feel when you see your child mourning his inability to interact with his peers? I often hear, "But ____________ is 10 and he can ___________, so why can't I?" He cannot understand that he has a disability, he only knows that others his age have privileges that are light years beyond what he can enjoy. 

And then there is the guilt that you have to work through in order to be the parent your child needs. 

You feel guilty for getting frustrated with his ceaseless chatter about nonsense. 

You feel guilty for resenting this disability that has turned life as you knew it on it's head and will continue to be foremost in any family decisions in the future. 

You feel guilty for getting frustrated with your child, because sometimes that stress presents itself in ways that make you wonder who you have become.

You feel guilty for insisting that your child have a small life even though it is in his best interest, because you know keeping his world small, means he is easier to care for.

All these reasons, plus a host of others make it incredibly difficult to explain what it is like to parent a child with FASD and from the inside looking out, it would make all the difference if only you could. 

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When The Gap Between Chronological Age And Ability Continues To Widen - Living With FASD

Joseph is in another one of his frustrating phases, although if I am honest, I am not sure who is more frustrated, him or I.

Joseph has always had an amazingly creative mind, he can make tractors out of a twist tie, paper and Lego tires. He can turn dust bunnies into animals and play with them for hours. The problems begin when he wants to make "real things," but lacks the ability to understand why his idea's won't work. He is currently upset because he cannot make a computer out of a broken calculator. Once, in an attempt to keep his brain occupied, we bought the book How Things Work, by Neil Ardley. Our so called brilliant idea backfired though, because now, 2 years later, he wants to make the things he reads about in the book and his "projects" never turn out like he envisioned which results in a meltdown.

This morning he took his calculator apart and became upset when his computer didn't work like the one in his book. I tried explaining why his idea wasn't feasible in an attempt to help him understand. I know, I am a hard learner but I keep hoping that someday he will be able to understand. Here is our conversation:

"Joseph, you cannot make a computer out of a broken calculator."

"Yes, I can! The book says all you need is a wire and a battery"
"Yes, but you need the right kind of wire, and one that isn't broken. You cannot build a computer out of something that is broken."

"If you would give me something that you don't use but it still works, I could make something."

"You need the correct parts. Even dad (who in his mind can do anything) cannot take an engine apart and make a chainsaw out of it, because he wouldn't have all the exact parts he needs."

"Yes, but I have my calculator screen and that is like a computer screen n I have the buttons. All I need to do is hook a wire to the buttons and then they will make numbers on the screen."
I finally came to my senses and tried a different tactic. "If you want to build things, make them with wood or Lego's, boys who are ten can't use machine's and make electronic toys."
He sat there with the most crushed expression and I was once more aware of how much FASD has robbed him.

Lest you think I got my point across....he is currently making a solar panel out of the calculator. I am bracing myself for the meltdown that will come when he realizes his solar panel doesn't work.

This gap between his age and his abilities is continually growing. He see's other 10 year old's doing things and he wants to as well, not realizing he doesn't have the mental or physical capacity to perform the same activities. Letting him try and fail, doesn't work due to a lack of cause and effect. 

We tried different kits including electronic connectors and Lego kits but he cannot follow the directions. Helping him build something doesn't turn out so well either as he has his own idea's about how things should work and gets upset when you tell him differently.

Recently he has been recalling things Tristan did when he was 10 years old. Unfortunately, he has a surprisingly accurate memory in this area and deems it unfair when we do not allow him the same privileges and responsibilities. In light of that, we have really begun hammering the fact that age does not equal privilege, rather responsibility does. So when Tristan was dreaming of the day he can get his drivers license, Dean reminded him, and all his siblings who were listening in, that just because you are legally old enough to drive does not mean you will get a license. We have to trust that you will obey the rules, drive safe and make good choices, before we will take you for your license. The phrases, obey the rules and make good choices are ones our middle two children are well acquainted with. Our hope is that, if we continue drilling this concept maybe by the time they reach the age where their peers are getting more responsibilities, it won't come as quite a shock that mom and dad aren't suddenly going to give them the freedom they so greatly anticipate.

Thankfully, I know this phase will pass as they always do, but in the meantime we will batten down the hatches, wait for the storm to pass and hope the damages aren't too great, while hoping against hope that some of what we are attempting to teach sticks! 

I would love to hear how you help your child cope with the gap between his age and the privileges other children his age have.

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Walking The Walk Is Harder Than Talking The Talk - Living With FASD

Many people with FASD can, "Talk the talk, but cannot walk the walk." 

For instance, let's say I tell Joseph he may play in his play area, but he has to stay there. He will agree, even repeat the instructions back to me, but 5 minutes later, he is out in the shop. I ask him what I told him to do. 
"You said I may play in my play area." 
"What else did I tell you?" 
"You said I have to stay there."
"So why were you in the shop?"
"Lia wanted me to get her bike."
"Who do you obey, mom or Lia?"
"I must obey you."
We go over the rules about obeying mom, he agree's to them, apologizes and .... guess what happens? You guessed it, he is soon off on another deed of kindness. Once more we go over the rules, he says them back to me, only to repeat and repeat this scene in a myriad of ways multiple times a day.

Another rule we have is, when we are away from home, he is to play quietly. Otherwise he will interrupt people to offer bits of advice that aren't relevant to the conversation. Some people smile and nod their head at his comments, others engage him which only increases his chatter, which in turn increases his dysregulation, Before we visit someone we go over the rule's, he can relay them verbatim, using the exact word's and phrases we use, but without fail, he doesn't follow through.

When we go shopping, he is to hold onto the handle of the shopping cart. I remind him, he agree's and as soon as I turn my back, he walks off to look at something that caught his attention. "I just wanted to see what it said on the cereal box!" Is his excuse when I reprimand him. "What is the rule when we are shopping?"
"I have to hold onto the cart."
"Is that what you were doing?"
"No, but I just wanted to see...."

I tell him to sit on the sofa and read his new book and seconds later he is off the sofa, looking for Kiana's book because he overheard her ask me if I know where it is. 
"What did I tell you to do...."
"You told me to stay on the sofa but, I just wanted to help Kiana and now you are scolding me for helping!"
"It is kind to help people, but it is more important to obey mom." I remind him for the umpteenth time.

Joseph does a lot of talking as I shared in this post entitled: Incessant Talking - Yammering - Excessive Verbiage. When we are driving he tends to verbalize everything he see's, which in turn triggers a memory of something he heard or saw, which reminds him of something he once did. If we don't tell him to sit quietly, he will talk nonstop, something his siblings do not appreciate! We always listen to an audio book or music, because that helps keep his mind busy and he sits quietly so as not to miss out on the story. There are times however, when he simply cannot be quiet no matter how many times we remind him to stop talking. That is when we tell him to close his mouth, look out the window and tap his hands on his knee's. That usually works. The only thing I can figure out is that it is the addition of a physical activity to the command. Again, he can talk the talk, but walking the walk is so much more difficult.

This used to look like blatant disobedience and caused both him and us no end of grief. We gave consequences for disobedience and he felt wronged because he didn't feel he had done anything to warrant the consequences. Once we understood that in order for him to be moderately successful, we needed to provide structure and support, things went better. We no longer give him a box of toys and expect him to play appropriately without getting dysregulated by the toys with lights and noise, instead we give him something like Lego's or matchbox cars. He can have fun and doesn't become so overstimulated he is unable to follow the rules we have put in place.

If you are wondering why we have so many rules, there are many reasons, but basically it boils down to a safety issue. Joseph seems to be drawn to mischief and can get into trouble or hurt himself within moments. If I know where he is, I know he is in a safe place and he won't find things which he can turn into a dangerous object. I know that just because Joseph can tell me what he is supposed to do. But even though he knows the rules, that in no way means he will be able to follow through. 

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Incessant Talking-Yammering-Excessive Verbiage - Living With FASD

 Incessant talking - yammering - excessive verbiage

If you have a child with FASD, chances are you are very familiar with these terms. Many individuals with FASD process information at a slower pace, some like Joseph, can process things better if they speak the words aloud. On Joseph's "limited cognition days" he tends to voice every thought and opinion that goes through his mind.

For instance, here is a conversation:
"Mom did you know it goes fast?
I do a quick brain search of my own trying to figure out what he could be talking about.
"The one that, umm, it went past the place where we live."
"I don't know what you are talking about Joseph."
"You know, when we were out on the grass it flew over top."
I ask questions, until I can figure out what he is trying to tell me. Sometimes I can get away with a nod of the head and an agreement, but other times he figures out that I am not following and tries to make me understand.

On days when his brain is working at maximum capacity, we have very few of these discussion's, when we over draw on his window of tolerance, they are nonstop. Usually after multiple conversation's I say, "Joseph, my ears are tired, no more talking." Thankfully he isn't offended, but typically within moments he will start, "Mom, did you..oh that's right I am supposed to be quiet." Not a minute later he will pipe up with another comment. I have found when this happens having him do about 20 jumping jacks every time he forgets, helps him remember. 

Today is one of those excessive talking days. To compound the problem, he reads/hears/see's things and interprets them incorrectly. He was looking at a Uline catalog, one of his favorite pass times and said, "Mom, did you know W@lmart and Uline are are trying to get the whole Amazon thing going again because the Amazon thing wasn't very good."  He showed me where he read this choice bit of information and that is not at all what the article said, but that was his take away, he won't forget it either. I just nodded my head and agreed rather than try to explain what the article really said because that would only lead to more question's, more words and more misunderstandings. And I wonder why my brain gets tired!

If anyone has tips to limit the over production of words on days when the brain has limited functioning, I would love to hear from you! Also appreciated would be tips to help siblings understand and thus be a bit more gracious. I often hear a sibling say in a desperate tone of voice , "Joseph, please stop talking!" 

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When Oppositional Defiant Disorder Is Really FASD

Our son was 5 years old when he first received a diagnosis of ODD (Oppositional Defiant, Disorder). For all intents and purposes, he appeared very defiant. I remember telling the psychiatrist, "He does whatever he wants, whenever he wants. He has no respect for authority, and consequence's make no difference in his behavior." It wasn't until Braden was diagnosed with FASD, and I started researching it, that I grew increasingly suspicious that Joseph had it as well. The boys are 11 months apart in age, and their birth moms living situation/stressor's hadn't changed in that period of time, making it highly probable that Joseph was affected as well.

In the past 5 years we have learned that short term memory deficit's, auditory processing disorder, world perception and lack of cause and effect, among other things, are the main issue's behind his struggle to follow direction's and obey command's. These are all symptoms of FASD, all symptoms of brain damage, not necessarily ODD.

When we give Joseph a command, it takes him several seconds to process the command and follow through with it. We have learned we need to be patient, because if we jump on him for not listening, he forgets what we originally told him to do and melts down because, "You are mad at me!"

We have also learned that what he hears, isn't necessarily what was spoken. If I tell him to put the milk on the table, he is just as likely to get the juice. Many children with attachment disorder will intentionally fail to follow direction's as means of controlling their circumstances. This is something we dealt with on a daily basis, and we used to think Joseph was doing the same thing, until we learned that processing disorders are common among people with FASD.

Joseph doesn't respond well to consequences which caused him and us no end of grief. If he was supposed to stay on the driveway to ride his bike, without fail he drove through the yard. Warnings, consequences, nothing helped. After having his bike "impounded," he would promptly drive it through the grass again, then have a spectacular tantrum when we insisted he park his bike again. He didn't associate having to park his bike with driving through the yard, no matter how many times we explained. 

Joseph's meltdowns can be something to behold! We used to get very frustrated when he would lay on the floor kicking and screaming at the top of his lungs. His face turned red, as tears and sweat poured down his face. In our opinion, it was total overkill. Then we learned about over stimulation and sensory overload. We learned that trying to reason with him or distract him only made matters worse. Threatening sent him into an uncontrollable rage and he would literally scream for hours. 

Looking back, it is easy to see the many mistakes we made in parenting our son. So many times we only made matters worse because we didn't know what we were dealing with. 

Here are some posts I wrote about our journey thus far:

When Your Child Has Been Diagnosed With FASD 

Parenting Accordingly - Life With FASD

Dysmaturity Extending The Toddler Years

No Boundaries - Living With FASD

10 Tips For Caring For Someone With FASD

What Is It Like To Parent A Child With FASD


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A Jar Of Peanut Butter - Living With FASD

Joseph ate a jar of peanut butter on Sunday. Yes you read right, a whole jar! 

Lia had her first OT appointment this morning and when I came home Tristan said, "Mom, I need to talk to you." I instantly knew that something had happened while I was gone.

"I went into Joseph's room to see what he was doing and he was acting funny (he has certain mannerism's that come into play when he is guilty) so I walked around his bed to see what he was doing and he had a jar of peanut butter. He was cleaning the last of it from the jar!"

My first reaction was to wonder, "How/when did he get a jar of peanut butter without my knowing?" The second reaction was to laugh. A WHOLE JAR OF PEANUT BUTTER?!?! 

There were various other food wrappers hidden in crevices in his bedroom which explains the excema that I haven't been able to heal despite faithfully applying cream.

I asked him about it and had him confirm the story he had told Tristan just to be sure there wasn't more going on that I should know about. His explanation was simple, "I took it Sunday morning and then I ate it at nap time." He didn't know why which didn't surprise me as he seldom knows why he does things. Impulsiveness  at it's finest!

The bright side is I can now lay my worries that the stomach bug is making it's rounds. On Sunday evening he couldn't finish his hamburger and was running to the bathroom frequently making me fear he had a stomach virus. He was also incredibly thirsty but no wonder...after eating a jar of peanut butter I would have been more than just thirsty!

This incident served to remind me why I keep him in line of vision and have so many safe guards in place. I am the one to blame because I got sloppy. He was doing well and I was letting him go from room to room without keeping an eye on what he was taking with him. Thankfully he seem's to be none the worse for wear!

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Why Do Children Save Their Worst Behavior For Their Parents?

Why can my child do well in public, but falls apart as soon as we are in the vehicle or at home alone?

This is a question that plagues many parents with children who have behavioral difficulties. Your home looks like a battle ground but when you are in the presence of others, your child presents normally. It is enough to make you wonder if you are slightly crazy or worse, maybe you are the cause of your child's behavior problems.

I can't count how many times our children have fallen apart as soon as we got in the vehicle, sometimes the doors aren't even closed before the screaming and kicking starts. Recently someone stopped by our house and the children held it together until the person was out the door. Then all their pent up emotions burst forth. It was almost comical how our house could go from quiet to chaos in moments...all because our guest walked out the door.

If this happens at your house, let me assure you it is a GOOD thing, not a fun thing, but a good one nonetheless. Ever think about the fact that is it with those you love that you tend to be the grumpiest? Why is that? Is it because you don't care how they feel? No, it is because it is with those you love that you feel safest. You know your family will love you even at your worst. Our children are the same way.

Your children know that mom and dad are safe. They trust that you as their parents are strong enough to handle their big feelings. They don't trust Grandma, your neighbor or their friends enough to show their big feelings so they bottle them up until they are with the people that have proved trustworthy. Not that other people aren't trustworthy but in our children's minds, and rightly so, mom and dad are safest.

Three of our children struggle in this area. With one child, what others see, is what we see at home. People think this child is a handful and I just smile because in all honesty, this child is one of our easiest. Two of our children are insecure enough that they present fairly well in public but look out when no one beside's our immediate family is around!

So if your child works to hold it together in public but falls apart at home, don't criticize yourself you aren't doing anything wrong. In fact it means just the opposite, your child obviously trusts that you are strong enough to handle his big feelings and that is an accomplishment.

*This post does not hold true if your child has RAD. These children present well in public because they are trying to get other adults on their side. Nor does it mean that your child who acts out in public as well as at home is not secure. This post is about a specific group of children, those who care what others think but are not physically and/or emotionally healthy enough to hold it together all the time.

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How To Get Your Child To Follow Instructions -Living With FASD

Jeff Noble had another great example/lesson on his FB page this morning. "If you ask someone with fetal alcohol if they understand they will say yes. Ask them to explain and they will get angry. If that happens find another way to help them understand, i.e. slow down, give them more time, less instructions." 

I remember when Dean and I were learning this lesson. We were beyond frustrated with Joseph because we would tell him to do something, followed with, "Do you understand?" Without fail he said, "Yes," and proceeded to complete the task incorrectly. We became more and more frustrated, why did he consistently fail to follow through with what we asked of him after saying he understands? Joseph was upset, Dean and I were upset and his behavior went on a nasty downward spiral. Was he intentionally lying to us, we wondered. If so, why? 

Then one day I learned that people with fetal alcohol often say what they think you want to hear or they may guess at an answer or only hear a few of the words that were spoken and then fill in the missing blanks with what they think you may have said.

Ahh! We had found the missing piece to the puzzle and life would be so much more pleasant...or so we thought! I began asking Joseph to explain what I wanted him to do after I gave him a chore. I was feeling terrible, "What if all along, he hadn't been understanding us and I was getting angry with him? I was in for a surprise ... oh the meltdowns and raging that ensued when I asked him to repeat what I had told him to do! I was stumped. We were following the recommendations and instead of incomplete tasks and an irritable little boy, we had a very angry child!

So I went to my trusty support groups and asked WHAT am I doing wrong? My child is so angry with me and I am only trying to help him! "You need to slow down, use as few words as possible and never give more than one command at a time and make sure you have his attention before giving a command." So we incorporated "good eye's" into our daily instructions. Good eye's are our code sign for, "I need you to look into my eye's and give me your full attention." 

I called Joseph to me, said, "Good eye's," then instructed him to put the plates on the table. "What are you going to do?" I asked. "Put the plates on the table!" He replied. No meltdowns, he did exactly what I asked of him and was so pleased with himself! 

Good eye contact and a few words spoken slowly - how simple but how difficult to remember!

I wish I could say we consistently remember this technique and it has been smooth sailing ever since, but that isn't the truth. Joseph hasn't changed, it is mom that gets forgetful and starts barking out orders only to be drawn up short when he stomps off in a huff or stands in the middle of the room with a lost look in his eyes. 

People with FASD can be successful if we change our expectations and provide the supports they need.... if only I could keep that in mind!

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