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 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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Mental Health Intake Appointment Woes

    Monday found Joseph and I at a local Mental Health office for an intake appointment. I am struggling to come to grips with the fact that we are going down this road with another child. B and I attended multiple such appointments while seeking the care he needed, and all those memories came rushing back with a vengeance as Joseph and I sat in the familiar 6x6 foot room discussing his history. 

   The poor therapist likely had no idea how closely he was being scrutinized while he conducted the evaluation. I analyzed everything he said and gave him a mental thumbs up when he listened to my views on Joseph's previous diagnosis of ODD and ADHD.  Most professionals give me the, "You are just the mom, what can you know," look when I disagree with them.

   The intake worker asked if I preferred a male or female therapist for Joseph, which earned him another thumbs up.

   He talked respectfully to Joseph, but didn't go on about how cute he was, another thumbs up. Joseph has the ability to hold his head just so, flash a shy grin and wrap people around his finger. That isn't always such a bad thing, but we can usually tell who understands attachment problems by how quickly and thoroughly they begin playing his game. The therapist rated high in this regard although I forgot to ask him if I will be allowed in the room during Joseph's therapy sessions. I can't believe I forgot one of the most important rules!

   As we were leaving Joseph wondered if he will be coming back to this place. When I said he would, Joseph said, "I like this therapist, cause you do all the talking and I can just listen." Sorry buddy, next time you will have to participate!

   I packed a book for Joseph to read during the appointment because I knew we would be discussing traumatic things. I hoped he wouldn't be able to read his book and listen at the same time. It obviously helped because he laid his book aside when we began going over a particular part of Joseph's history. I asked him if he was finished reading and he replied, "No, I want to hear what you say." 

  I don't like these intake appointments. Giving your child's history while they listen in, isn't conducive to their healing. I feel like I can't give all the details of certain situations because it feels so demeaning to be talking about my child's behavior problems while he is listening in.



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Phone Calls and PTSD

Yesterday I made the first of  series of calls that will determine Bradens future. I left a voice message which was easier than discussing everything at once. One small step at a time is easiest for me. I had been feeling very upbeat about the whole issue, least I thought I was! Denial would be a better description. My emotions after making that phone call were like the waves in the ocean, one moment up and the next in the valley. Sometimes I feet confident we are making the right decisions and that we are following Gods leading but that quickly, I am assailed with doubts and fears that maybe we just think we are following God, when in truth we are being deceived. I asked Dean if I will know if I am getting depressed (mild term for going crazy) or will it sneak up on me without warning? He wise advice was, "You will get depressed if you keep worrying and wondering if you are staying sane." I am so thankful for a calm, husband who understands people. I keep telling him he is in the wrong profession, he should be a counselor. He told me, he does quite enough counseling between the children and I, he doesn't desire to take on more of it, thank you very much! 
   We have been hearing a lot about PTSD beings yesterday was Veterans Day. I am going to put a plea out there for foster/adoptive parents, if you at all suspect your child may have PTSD get help. If you think they should have it due to the circumstances that they endured, get help. This doesn't just apply to children from hard places, anyone who has experienced trauma is at risk for PTSD. I heard a good description of it this morning: PTSD is the normal reaction to an abnormal situation." That summed it up better than anything I have ever heard. Our brains react to trauma and the natural reaction is PTSD. I have my own trauma from our struggle with CYS which is making it all the harder to make decisions for Braden's future. 
   All of our children came to us preverbal, meaning before they could verbalize what they were feeling and experiencing. They do not have the words to explain what upsets them but they do act out when triggered. For a long time we treated Joseph's fear of lights and sirens as a normal childish fear. One day I was reading over his files from CYS where I read about some of his early life experiences. The pieces began to fall in place and I came to understand that Joseph wasn't just afraid, he was traumatized by what had happened and he needed help. Last week the first grader's went to a local fire station for the afternoon. Joseph was a bundle of nerves so I gave him the option of staying home. He wanted to go however so I spoke to his teacher and gave her a few tips on calming him if he panics and sent him to school with an extra prayer. Guess what? He loved it! His dear teacher took extra pains to be sure he felt safe and he had a grand time. Slowly but surely the wounds he received are healing! We praise God for that!

Understanding RAD

I had many people contact me after I wrote the post on PTSD and RAD, asking for permission to share the article with family & friends who didn't "get it." I am glad I was able to help them out but at the same time it brought back those memories of "the early years." That period of time when we knew something was wrong but had no idea what. I remember sitting on the sofa beside our son while we had family devotions and wondering why I didn't feel the same love and protection for him that I felt toward my other children. After all, how hard is it to love a 2 year old? They are inquisitive about everything, always trying to do what they see mom and dad doing and full of hugs and kisses. I now know that in order to have a relationship the give and take must go both ways. When I cared for Braden, he panicked because he felt that pull of connection. In order to keep that feeling at bay he would push one of the babies or mess up their toys. It was his way of saying," I don't want your help." But since he was only two he needed my help. Imagine how frustrated and scared he must have felt? After kissing his ouchies and attempting to hug away his tears only to have him retaliate, I backed off thinking, this is one strong child, he doesn't need to be comforted when hurt. We got into more and more control battles. If the child refuses to dress, you can dress him yourself. If he refuses to pick up his toy, you can give him a choice, pick it up himself or mom picks it up and sets it away for a day. One thing you cannot do is make a child eat. As one therapist told me, "You cannot control what goes in and out of a child." When your child decides to go on an eating strike because he doesn't want to do something, who gives in? One mom told me that it is our duty to protect these children from themselves as they so need to being in control they will fight till the end. I remember one time Braden was refusing to eat a sandwich, just to be obnoxious and prove his point. I knew his MT (mobile therapist) was coming in a few minutes so I decided not to fight with him and let her handle it. Well she walks in the door and see's my sad little boy sitting dejectedly at the table and asks what is wrong. He told her he doesn't like his sandwich. I explained that he did like it he was just testing his boundaries. So she asked him if he would eat a sandwich if mom made a different kind. Of course he would! As I had my back turned making the sandwich the MT said, "He is laughing at you!" Umm, yes, he is! He just got another adult to side with him against mom! I have since learned to pick my battles and not make an issue out of it. I should have told him, "Your sandwich is in the refrigerator if you get hungry" and walked away. Live and learn.
   There were times when Braden would act as though he had made a huge turn around and be as good as gold. He was so good, I walked on pins n needles because he was too good. You say I am hard to please. Maybe so, but trust me, when you have a child who tries to manipulate you, you get very good at deciphering his motives. I thought long and hard about how to explain how we as parents learn to read our children who have RAD. One day it hit me, how do mom's know when their new born is tired or hungry? By his cry. Dean and I got so good at reading Braden that we often knew what was wrong before he did. See, he couldn't/wouldn't tell us what was wrong when something was bothering him. He would become hyper alert and on edge. By quickly running through the days happenings we could usually figure out what was bothering him.
   Your child will learn very quickly what triggers you and he will push those buttons incessantly. Children with RAD are like a wild animal caught in a trap, their senses are all on high alert at all times. Our brains were not created to live in a world of hyper arousal and the damage is great but I will leave that for another post. Braden had a way of knowing everything, whether we talked about it or not. For instance if we planned to go to Grandpa's some evening, we didn't tell him until it was time to get ready as going away was stressful for him. This was due to the fact that he had so many more people to read and his brain had to scramble to find words/actions so that he would know where everyone stood in regards to their awareness of his feelings. Anyway, he would know we were going to go away, even if there was no visible sign that we had plans. His therapist told me that these children can be in the basement and hear what is whispered in the attic. When Braden was having a good day it helped if we sat down and told him where we were going, who would be there and what he would be doing. We kept him in eye sight as he was much like a toddler in that he couldn't control his excitement level. Picture a toddler running and playing with his siblings, he goes and goes until he ends up crying. Children with RAD are the same way, they cannot "read others visual cues to know when enough is enough. They often end up hurting either themselves or others. Children with AD suffer from an inability to read others facial cues, so if you are reprimanding your child, he may laugh in your face. This is utterly frustrating if you are frazzled to begin with. However knowing why your child does this helps dampen your irritation. Some would say, "your child will never learn to monitor his emotions if he is not given the chance to learn by being with his peers." That is true, however that is a "lesser need" than learning to attach. Before your child can grow emotionally he first needs to learn to attach. A child needs to go through every stage in life and as long as the child does not attach, other emotional things cannot be instilled. God created us to first bond, then grow in emotional maturity.
  If a child has RAD he often has PTSD and will be triggered by sights,sounds and smells. You may be eating a meal and your child smells something that brings back a terrifying memory. Perhaps Dad beat him while mom was making hot dogs. Guess what happens when you make hot dogs? Your child panics and says some nasty words, kicks his chair and pushes his cup over spilling the water onto your lap. If you don't understand PTSD you will be frustrated and quite possibly send your child away from the table. The child then feels like he is being punished for his fear which is not at all what you want. The correct response would be to rapidly run through various scenario's as to what caused this out burst... what did I just do/say that could have triggered this? Then if your child is receptive, you can stand beside him and say, "You are safe, now." "Mommy is safe, Daddy is safe. " Other things to try are slow, deep breathing, standing up and stretching or massaging those tight muscles. You have to figure out what works for your child. Ours all respond differently and it takes trial and error to learn what works best.
   By no means do I have all the answers but after several years of therapy sessions, I have come to understand the basic elements of attachment and a few techniques to hasten that attachment. And as a disclaimer, all children respond differently, what has worked for us may not work for you.