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Thursday, January 18, 2018

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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Tuesday, January 16, 2018

When People Are The Cause Of Dysregulation -Living With FASD


Socializing is one of Joseph's biggest struggles. Having no self regulation and the ability to go from zero to one hundred in a few seconds time certainly doesn't help. No regulation means he doesn't have many chances to practice socializing, since people are his main cause of dysregulation. 

At ten years of age, he is very well protected since Dean or I are always by his side unless we leave him with a babysitter whom we totally trust to keep him safe. However, I get little glimpses of what his future could be like if/when the time comes when it becomes more difficult to keep these safety nets in place. As of now, when someone asks him to do something or if he wants something, he always looks to Dean or I for confirmation before accepting. But what about the time's when he doesn't have us there to guide him? This was one of the reasons he didn't do well in school. He was constantly getting into trouble since he didn't have anyone to look to when he had to make a decision. To make matters worse, the other boys knew when they had taken something far enough, not Joseph, he kept on and reaped the consequences while his buddies usually got away with it.

The normal social cues that would clue you and I in when something doesn't feel quite right, totally goes over Joseph's head. He has no sense of what is appropriate or inappropriate leading to some embarrassing moments for his parents!

Recently Joseph had an appointment that nearly led to disaster. I can't blame him either because I was the one who should have stepped in and stopped the interaction. It happened at his dreaded psych appointment, the one where people were spouting off right n left. Joseph was already on edge because he despises this appointment as much as I do. Anyway, a woman and her son were sitting nearby and when 20 minutes of aimless waiting had slowly passed, she pulled a fidget spinner out of her sons backpack and handed it to Joseph. He of course looked to me to see if it was okay, and I nodded. I should have stopped the interaction right there but me and my insecurity over, "what will people think if I make my son sit there with nothing to do," got the best of me. Joseph has begged for a fidget spinner but for many reasons he isn't safe with one. He tried to get it spinning and this lady was encouraging and loudly cheering him along, causing intense dysregulation. Then she started asking him questions, simple one's which made his, "I am no longer feeling safe so I will just give a huge smile," big, cheesy grin to appear. I was praying that they would call his name when the lady patted the seat beside her and told Joseph to come sit between her and her son who was busy playing games on one of his many electronic gadgets. Joseph immediately jumped up and I put my hand on his arm and said, "You need to keep it under control, or you will come sit beside me again." He did surprisingly well considering he has no media time at home, he was in a situation where he was ill at ease and he was waiting for a dreaded appointment. By this time I was thoroughly berating myself for not stopping this in the beginning. I knew there was no one to blame but myself, although deep inside I thought the woman should have known better than interacting with another child in such an office! I could sense his anxiety rising, although on the outside it looked like he was having fun. This is what makes it hard for people to comprehend why we go out of our way to keep his world small and low key. By the time they called Joseph's name, he was thoroughly dysregulated and I was a nervous wreck. 

I would love to hear how you teach your children with FASD to self regulate. How do you manage situations when in public? My son typically doesn't learn from experience as is common for those with FASD, so giving him more freedom so he learns social skills doesn't feel right. We have tried teaching him using charts with facial expressions but he couldn't identify even basic faces such as sad, angry or scared. 

We have also been trying to teach him coping skills with a minimum of success. Recently I watched a video on youtube that explained how hugging oneself by crossing your arms, putting your hands on your upper arm then rubbing, patting your arm can help you feel grounded as well as knowing where you are in space. This has helped Kiana a great deal but it only makes Joseph angry because he says, "You are giving me consequences when I didn't do anything wrong!" As usual, explaining that we are trying to help him feel better, does little good.

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Monday, January 15, 2018

The Pain Of Remembering

Sometimes I get a bit frustrated with my children when they are obviously reacting to a trauma trigger but have no idea what is bothering them. I ask how they feel and they shrug their shoulders and say, "I am angry!" Now we all know mad is a cover emotion, sad, scared, worried all typically show themselves as mad.Our two middle children are "mad" a lot according to them, but if we can get them talking, we usually find another big feeling is to blame for the actions/attitude. 

It is amazing how often God allows me to experience something so that I can better understand my children. For me understanding allows me to be empathetic and compassionate. I wish I was one of those people who can ride the waves and not be affected by their children's trauma behaviors, but I am not. However when I can understand a bit where they are coming from, suddenly it makes perfect sense.

Yesterday was one of the hardest days I have had in a long time. I didn't know why, couldn't make sense of it. There were a few small issues that triggered me but none big enough to make me meltdown in tears during Sunday School They were big, messy, heart wrenching tears. I kept praying that the tears would stop but they refused to. Si I kept my head bowed and hoped I wasn't being too obvious. Kiana whispered, "Mom, are you sick?" She kept looking at me with concern which made the tears come faster and harder. I was ready to tell Dean we have to go home but I prayed that if God wants us to stay for the remainder of the service, he would dry up my tears. He did, so we stayed although we left immediately afterward, much to the children's dismay.

The rest of the day, was hard and try as I might I couldn't figure out what was wrong, so I blamed it on withdrawal. This morning I had a memory from several years ago on FB and I knew what was wrong. Yesterday was Braden's birthday! I knew it was coming up and I had determined not to let it catch me off guard because the same thing has happened before. But as usual, life got busy and I forgot. What a good reminder that, "The Body Never Forgets."

Our bodies were designed to retain information but sometimes that retaining means our hearts are broken again and again. Our minds forget but our bodies never forget what we have gone through. I remember reading somewhere that when you experience something too painful to think on, your brain provides a barrier and you "forget" until such a time as you are emotionally strong enough to process the loss. I think that is what my brain is doing, little by little I grieve those painful years and all that happened. If I remembered it all at once, I would likely experience a mental break down. I find this is very true with our children, there are some things we work through time and again and each time, new memories/thoughts are recalled and a bit more healing is accomplished. 

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Friday, January 12, 2018

A Busy But Blessed Week

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

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

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


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

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

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

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

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

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

Wednesday, January 10, 2018

When Routine Is Disrupted - Chaos Ensues

Children with early childhood trauma thrive on routine. Routine means security, it means they don't have to wonder what will happen next, it means they don't have to fear that they will experience pain or harm from an unknown experience. Even simple things like going to Grandpa n Grandma's house is scary. They know they are safe there but that fear that was planted deep into their psych when they were but infants refuses to allow them to enjoy activities without becoming hyper vigilant.

Beginning this week, Dean will be working night shift in order to get a project completed. The children are.a.mess. They didn't do too bad until today, then it all broke loose. Joseph has been super hyper vigilant. He see's everything that goes on around him, hears everything that is said and has the solution to every thing that befalls anyone in the house...but he is unable to keep at his school work, he can't follow instructions, he forgot how to eat pizza and wanders around the house as if he is a stranger in his own home. Kiana reacted in what is typical for her, outright defiance, meltdowns and rage. Ask her to do something and she will do it halfway, pretend she didn't hear you or lets out her big feelings at the top of her lungs. Lia cries and cries and cries. Monday night we called Dean and a few minutes of Face Time with her daddy made her feel ever so much better. Tristan was getting fed up with his siblings reactions and tried to step in which only made matters worse. I told him he is the man of the house and he cannot allow the younger one's big feelings to upset him. He responded that the man of the house wouldn't let them get away with such acting which is true, but the man of the house would understand what is going on and redirect them

Sometimes I get frustrated with the seeming lack of progress my children are making in dealing with their trauma. We have done years of therapy and go out of our way to help them feel safe and secure but still they struggle. Then I had a "trauma flashback" that put this in perspective.

On Sunday our teacher asked if anyone would share a time when they were at the end of themselves and God answered their prayer. My stomach knotted, I got hot from head to toe, my heart started racing and my throat choked up. In that instant I was back in the room with CYS being told that I was a horrible, mentally ill mother and that Dean and I were abusive parents. My legs were weak and trembling and I feared I was about to experience a panic attack right then. Thankfully I got my emotions under control and was able to remain in the room. I remember thinking, "This is how the children feel when they are triggered." I was sure I wouldn't forget that lesson right away but a few days later found me feeling overwhelmed and frustrated with their trauma responses.

If I have such intense reactions to things that happened to me as an adult when I had a semblance of control over the situation, how much more intense must it be for children who zero control over their safety and well being?

I know if I am calm, quiet and gentle they respond so much better but it seems I can take it too a certain level then my brain screams for peace and quiet. I become almost frantic in my need for the noise to cease and the stress to fade away. A friend who has a newborn who was born addicted to drugs said a nurse told her that babies born with drugs in their system have no tolerance window. They need their needs met NOW or they become inconsolable. I tucked that nugget of truth away and decided that maybe I should show my "drug addicted brain" that is going through withdrawal some grace.

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Saturday, January 6, 2018

When Your Child Has Been Diagnosed With FASD



So, you recently learned your child has FASD, now what? I am frequently contacted by parents who's child has been diagnosed and they are fearful, lost and overwhelmed which is completely understandable when you are looking at something as complex as FASD. Here is some of the information I give them:

It is an overwhelming diagnosis, with lifelong implications so it is understandable if you feel discouraged, angry or even bitter. Give yourself some time to grieve, show yourself some grace because you will need it in the days ahead. 

While FASD is a lifelong disability there are many things you can do to make life easier for you and your child. You are going to mess up, sometimes majorly, but don't give up because each morning brings a new day. One of the positive things about FASD, is that those with this disability  are always willing to give you another chance if they know you have their back.

Join a support group. There are some excellent ones on FB.  Flying With Broken Wings and Parenting FASD Kids are two of my favorites. These parents have seen it all from infants with failure to thrive to teens/young adults who need out of home living supports. When I am faced with a new behavior of Joseph's or he does something that I cannot make sense of these are the groups I go to for advice. If you can find a live support group in your area, that is awesome. NOFAS is an excellent source of information if you are trying to understand FASD.

Next put interventions in place. If your child is melting down that is a sign that he needs more support. If the meltdowns happen over getting dressed, he may need you to choose his clothing and hand them to him in the order he is to put them on. He may need you to dress him even though he is way beyond the age where children typically need help dressing. If the meltdowns happen when you go out in public he may be overwhelmed with the noise, action, bright lights or the need to converse with people. If they happen at bedtime perhaps a weighted blanket, soft music or night light would be helpful. These are just a few of the things that bring on meltdowns for those with FASD. Keep in mind that your child will respond to things in his own unique way and require intervention that is specifically designed just for him.

Your child may become overstimulated quite easily and you will need to step in and monitor his interactions with others. This is something many with FASD, but not all, struggle with. If this is an issue, you will need to step back from the busyness of life. This isn't easy but is sometimes the key to getting your child back on track.

Let go of what is typical for a children your child's age. Our children with FASD typically function at half their Chronological Age. This means your 2 year old presents as a 1 year old but your 18 year old may present nearer to a child who is 9 years old. The older your child is, the more complex this becomes. In our state you can get your license when you are 16 but if your sixteen year old functions at a 8/9 year old level, he will not have the executive functioning necessary to handle a vehicle safely. He may also have a hard time making good judgement calls in the places he goes and the friends he keeps.

There will be days when you feel alone, days when you cry, "Why me, why my child?" You will be horrified when you see pregnant women drinking alcohol. You will get weary of "fighting" school and law personnel as you try to get your child the services he needs. Your days will be consumed with making life easier for your child so that you in turn can enjoy life because as any parent will tell you, "When your child with FASD is struggling, the whole family struggles."

Your child may lash out at you in anger but try not to take it personally, even though it is sometimes nearly impossible, because he will let his pain out with those he trusts. Never forget your child needs you even if his words and actions appear to show otherwise. When your child lashes out, go to someone who understands, then laugh n cry together. A friend and I text regularly and laugh over the craziness of our lives.

You will have to build new dreams but that isn't necessarily a bad thing. You will find pleasure in watching your child succeed and knowing you have helped him reach his goals. You will learn that you can do hard things, you can overcome and in the end, hopefully you can say, "I wouldn't trade my experiences for anything!" Even though if you could you would do all in your power to heal your child.


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Monday, January 1, 2018

When Trauma Derails Your Parenting


When you have a child with trauma, especially complex trauma, you need to be the stable, unshakable adult. When your child is sad he needs you to comfort him, when he is excited he needs you to help him restore calm, when he is overwhelmed he needs you to make his world smaller and assure him you are in control.

That sounds easy and uncomplicated, it is what every mom does, right? It is, but when your child has trauma, there isn't anything easy about it. Your child has to "give" his pain to someone and that someone is usually mom. That means that all the anger he has at his birth parents, all the anger and sorrow he feels about his situation and all the "it's my fault" pain which is usually portrayed as anger is directed at the one person who is also responsible for meeting his needs. Needing mom, while also blaming her for his troubles creates a confusing scenario for the child. 

What we don't often talk about is how confusing this can be for the parents, especially the mom who, as I said before typically bears the brunt of the negative behaviors. 

Mom is usually the one who spends the most time with the child so she is the one who attends therapy appointments, psych consults and specialist appointments. She is the one who needs to build a bond with her child...the one who needs to teach her child how to build relationships so he can go on to have healthy social/emotional relationships with his peers. 

Mom is the one who analyzes each behavior, each response to any given situation. She constantly takes her child's emotional temperature. Is he becoming overstimulated, is he afraid, is he acting in such a manner to manipulate people, is he safe, are the people around him safe? After you parent a traumatized child for a while you become adept at unconsciously taking this temperature and adjusting your child's world accordingly. 

All this is necessary for your child to achieve optimum emotional health but there is a pit that mom can easily fall into, one into which I fell headlong and floundered until my dear friend came to my rescue.

Years of analyzing my children's every act and word so that we can jump on the necessary help, made me see a lion behind every bush. My children subconsciously picked up on my anxiety over what may be hiding behind their actions. This brought about exactly the opposite effect from what we were trying to do...create felt safety.

I sent my friend, who is my mentor in all things trauma, an email detailing what is going on with my child, what I think is the cause and where I fear we are headed. "What do you think is going on?" I asked and as I expected she came through with just what I needed. 

"You need to back off and stop being so invested in your child's emotions," she counseled. Now that may sound counter intuitive to what you know about attachment parenting but I well remember when we had to do just that with Braden. There is a a quote floating around in the trauma world that advises, "You cannot try harder than your child." Meaning that the parents cannot do all the work in building a relationship with their child while he sits by and does nothing. Relationships are a two way street and both parties have to put forth effort.

I knew I was taking my child's actions personally, when she had a bad day, I agonized over why. I tried to figure out what I had done wrong, what I could have done differently and most of all, where would we find the help we needed? Was there help for us, for her? On her good days, I analyzed every action again, trying to figure out what had made the day a success. Deep down though, I was anxious because I knew it wouldn't last so I was waiting for the inevitable fall out.

"You need to step back and give one line responses to the negative behavior, don't invest so much of yourself. See if that doesn't lower your anxiety which in turn will lower her's." Coming from anyone else I would have questioned how this could possibly work but this friend has walked the trauma journey far longer and further than I have and her advice has always been what we needed to hear. So beginning today, we are going to love our child/ren but try to stay out of the crazy trauma cycle so we can be the strong, stable parents they need.

*I refer to mom in this post as the one who bears the brunt of the child's trauma response to make my post less wordy but "primary caregiver" could be used in place of "mom." 


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