FASD and the external brain.

Many people with an FASD (Fetal Alcohol Spectrum Disorder need someone to be their “external brain”. This means that their brain is not able to make all of the connections that a “neurotypical” persons brain would. They need help with completing daily tasks, doing homework, learning new things and recalling previously lessons can be challenging, and decision making often needs another persons insight. Therefore the person with an FASD needs someone to help them think things through and make good safe choices. The responsibility often falls upon the immediate family and caregivers.

The consumption of alcohol while pregnant can result in brain damage to the unborn baby. This is avoidable! Do not even have a drop while you are pregnant! It is simply not safe for the baby.

The damage from drinking alcohol while pregnant can be seen in many ways and it affects a ton of different areas of life depending on the areas in the brain that have been damaged.

In our youngest child, we witness the broken connections in his thoughts so often throughout the day. It can be extremely frustrating for him and his family as well.

For example, he decided to help out and check the mail today. What a sweet thing! As he attempted to walk out the door with his trusty sidekick (dog) by his side. I had to stop him. He was about to walk outside into the 6 degree lovely Minnesota winter weather with his slippers on, jacket not zipped, no gloves, and no hat. In his mind this was totally fine to stroll down our long driveway and retrieve the mail.

This is a task that most teens can accomplish with only a slight thought about the need for proper winter attire. However our son is not like most teens. I often have to remind myself that his brain is often at 1/2 of his actual age… so around 6-7 years old! Yes, this is an accurate figure too…

“Take your child’s age and cut it in half. That is the age you can expect them to act.”

https://www.mofas.org/2014/05/raising-children-with-fetal-alcohol-spectrum-disorders-fasd/

Once he was stopped at the door the “external brain” (AKA Mom) attempted to help him do an assessment of cold winter attire needs. He looked at me with a very puzzled look when I asked him to stop and be sure he had everything needed. Then I asked him what he wore to the gym this morning and he relayed to me everything that he had on. I then asked if he had all of those things on now and he insisted that he did.

🤔 How do I help him figure this one out on his own?!

💡 When I broke it down into smaller bits one thing at a time, boots, stocking hat, gloves, and a zipped up jacket; he was able to figure out the missing items. This is a regular occurrence in our home, with every part of life including dressing, bathing, grooming, toileting, behavior, chores, homework, and also out in public.

Many have said things like, oh don’t worry this is typical, he’s trying to be cool, or he’s being defiant and testing you because he is a teen, but let me assure you that this is far from what’s actually going on. He is not trying to test us or “be cool”. His brain is simply wired differently because his bio-mother drank alcohol while his little body was developing.

The example above is only one small glimpse of the struggles an FASD person deals with daily.

FASD (Fetal Alcohol Spectrum Disorder) is an invisible illness and it is so easy for others to judge parents and caregivers until they are blessed with an opportunity to walk in those shoes.

There are many other areas where our son struggles. We could write for days on these areas, but I’ll list some of them to give you an idea. His body does not register hot and cold differences until it’s too late. The filter on his mouth is often not working so he may say the wrong thing and unintentionally hurt someone’s feelings. Due to some temporal lobe damage his emotional control is not always in control and he doesn’t quite understand others emotions. He may act in a way that is extremely “young for his age” (at any given moment his brain is capable of 1/2 his chronological age) and play with younger kids or little kid toys. He gets overwhelmed by external stimuli easily and his frustrations can escalate quickly. He typically does not see the dangers in his actions until it’s too late. His mind is taking in so much information from all around him and trying to process it all at once, but the connections in his brain are not quite able to jive with each other. He forgets what comes next quite often and needs reminders or cues and clues to help him figure it out. Yes, his mom often has to stand outside public restrooms and talk through the door to remind him to flush, wash, and dry his hands, double check all zippers and buttons are in their place. I am not joking! This…is…our…life, but we wouldn’t have it any other way! God blessed us immensely with all of our children!

It is so sad, but quite often FASD parents can be referred to as helicopter parents or accused of not giving their children room to be his or her own person. In our experience and observation of others experiences, this is not even slightly true. Parents and caregivers of children with an FASD try extremely hard to locate and provide all of the possible tools and therapies that might help their children grow into successful productive members of society. And we pray that one day they may not need an external brain.

Unfortunately, these children are expected to fit into the molds that society has in place for neurotypical children, but they are not made for that mold. They are wired uniquely due to the alcohol related brain damage they incurred while their little body was developing. They each learn differently. They each need caregivers who are always learning and trying their hardest to help them succeed.

The life of a caregiver is difficult, long, often thankless, filled with questions and uncertainty, and it is exhausting. It also has many rewarding, happy, and fun moments! ALL of these words can be used to describe the life of a person with an FASD as well.

Respite care can be a huge blessing for families of children with special needs, however it is often not found or possible for children whose needs are complicated such as our sons. Parents with children who have multiple diagnoses and complicated medical needs cannot simply leave their child with anyone who knows basic first aid and CPR. Respite caregivers need to be well versed in all aspects of the child’s daily needs, schedules, medical needs, coping strategies, tools, medications, what to watch for, how to properly respond, and know when to call tho call the parents for help. The respite person needs to be an external brain that temporarily replaces the daily external brain. These people are also a rare breed and very difficult to find. Do you see where things can get a bit complicated for special needs parents and caregivers?

Parents and caregivers of special needs children are a rare breed. God has blessed them with these special individuals because He knew they were the best people to care for them.

I believe our society needs to do better to help them, provide respite care, support and lift them up, drop the judging, and try to understand even a tiny bit of these things can go a long way.

5 things I have learned through our sons medical struggles

Along the path of life we often learn lessons and hopefully share them with others. I hope these 5 lessons about fixing it all, our individual importance, grief, faith in marriage, and “just being” who we are bless you or someone you know.

1. I am Mom, but certainly NOT Bob the Builder. I can do many awesome things, but cannot “fix it all” nor should I try! You see, I viewed my role as his Mom and caregiver as the one person who had to find a way to “fix it all”. The caregiver in me wanted so desperately to take it all away and help our son recover as quickly and painlessly as possible.

Through the years since his initial diagnosis, I have learned how to stop trying to be the one to do it all and let the one and only God have control. Those who know me best are fully aware that It…has…been…SO difficult for me. I am very independent and my Polish roots are strong (read “This woman is STUBBORN TO THE CORE”), so it has taken many years for me to learn this lesson! I wish I would have learned faster… so many mistakes would have been avoided! Friendships may have been salvaged. And my marriage might have experienced less pain and more happiness!

2. I am important, needed, a critical piece to our family, and I MUST take care of me beyond basic daily necessities like showering and eating something semi-nourishing. I learned this lesson when I was smacked hard with the reality that I’d lost myself in the medical mess. I did not recognize the woman in the mirror… I missed many precious moments with our children and family.

You see, when our son was diagnosed with epilepsy (his first of many medical diagnoses to come), I immediately immersed myself in all of the literature I could find. Along with taking care of his every need and being a mom to his older siblings; researching, learning, looking for new data and things that might help him became my daily activities. I allowed it to consume me. His seizures took over my every waking and sleeping moment.

The things I loved to do for myself were put off. I ignored friends and made excuses to not go out because I feared he may need me or I might not be right there to help him through a seizure. I ate whatever was available regardless of nutritional value, I took all of the responsibility to care for him onto myself, pushed my husband away often when he saw that I needed a break or simply because he needed his wife, neglected to put my marriage as a priority, and I neglected to take time for myself to cope and even to grieve.

3. Grieving is important! Stop a minute here and ponder this thought for a moment. A child is a gift from God, they are always perfectly made in their parents eyes, we have hopes and dreams for them, and we want the best for their lives and future. When something such as a life changing medical diagnosis comes along it upsets that perfect beginning. The hopes and dreams might begin to feel distant or unattainable.

Well in this case, our sons seizures did not stop. 24 + 2 is his medical number… over the course of 4 years, he failed every seizure medication offered (24) AND two emergency medications that typically stop epileptic seizure status. We also tried some natural remedies. Nothing seemed to work for him and when we thought something was working, the side affects would begin.

We did find one rescue medication that stopped the seizures, but it resulted in lapses of memory and he did not achieve a “therapeutic level” on any of the daily medications. He suffered many side affects from the medicines and became a pincushion as most medications required blood draws to evaluate his levels often.

It has been a difficult journey for our entire family. We still have our son and that is the best blessing, I thank God every day! However, I did not allow myself even a moment to grieve the loss of my hopes and dreams for him. I did not want to look at or accept what Gods will is for his life. Instead, I allowed myself to slip away, become consumed with the illness, and I began to push God into a corner while I placed my faith in western medicine.

I recently found J. William Worden’s “Four Tasks of Mourning” and find them so appropriate for this process which I’ve slowly gone through over the past eight years. The tasks explained in his book, “Grief Counseling and Grief Therapy”, describe any grieving process in a way that I think is quite appropriate. It is important to note that the process does not happen in any particular order.

T = To accept the reality of the loss

E = Experience the pain of the loss

A = Adjust to the new environment without the lost object

R = Reinvest in the new reality

For years I continued down this path that was gloomy, destructive, and unhealthy! While I often allowed myself to crawl into the shower or lay in bed at night and shed a few tears, I did not fully grieve.

After eight years of allowing myself to be consumed by grief I am finally able to say I am through this process and God is fully in control. He has shown me my weaknesses, areas I can work on to improve, and has blessed me with opportunities to make those needed changes. The first one is in my marriage.

4. My spouse, our marriage, and our life together came first therefore it must be placed in a position of priority daily! We’ve been blessed to be together for over 20 years. Over the years as I’ve eluded to above, I have pushed my sweet husband away when I really needed him most and when he needed me. I was not there for him when he needed me, and I allowed myself to become consumed by our child’s illness so much that I basically walked through the years with blinders on. I put our child, his medical status, and even my fears for him and his future above our marriage.

It pains me to admit it but, the truth is that we came very close to the edge a few times over the past eight years. We both have our faults in this, and we did not know how to cope with the illness, our needs, and ultimately how to grieve through it together. Together we went to church, but our faith was not strong. The enemy tried many times to get a foothold, but God had a plan!

We have learned that together we must place God first and ourselves and our spouse second in order for our marriage and family to thrive. We are stronger together. We have a strengthened faith, our marriage is healing, and our future is bright!

With God all things are possible! Phillipians 4:13

5. In the words of the great Dr. Seuss, “Be who you are and say what you feel, because those who mind don’t matter and those who matter don’t mind.”

This was one of the easiest yet at the same time extremely difficult things for me to learn and accept! I never felt like I fully “fit in” to any particular group or clique in high school. Yes, I had friends but the super close relationship with “girlfriends” was not within my grasp.

We became parents young, and didn’t have time for friends because our babies were priority #1. AND, through all of the years of medical stuff, I lost who I was and who I wanted to be aside from being a mommy.

I researched, listened to the wrong people for advice on many matters, and was easily swayed by temptation. Dr. Seuss’ words are so important! Who you are & what you feel are unique to you! You matter in this world, you are important, and aside from God nobody’s opinion matters! For years I stuffed my emotions and feelings deep down, kept my fears to myself, and I listened to others thoughts and opinions. I realize that this was destructive and unhealthy. It is vital to our existence to BE WHO YOU ARE & SAY WHAT YOU FEEL! Never let others dictate your actions or future!

Finally, I will leave you with one thought. God allowed things to happen in life, so what was/is the purpose?

© Sarah Jenson and In the Thick of Life, Blog, 2019. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Sarah Jenson and In the Thick of Life, Blog, 2019 with appropriate and specific direction to the original content including a link to the original content.

Five things for when it’s all out of control

Friend, I’m going to share a few things in a straight up way. I don’t believe in all that beating around the bush and sugar coating silliness. I prefer bluntly painting a reality based picture. Bear with me in this one as it may stir up some things within your heart, mind, and soul. If it does, I pray that you will consider this an area to focus your heart and prayer on.

Before we go any further I want to be clear that I am not a counselor or professional by any stretch of the imagination. I write this blog from 20+ years of marital experience, my personal faith journey, and a nudge from the Lord. I pray that this inspires, encourages, uplifts, and brings you closer to Him. I also pray that you will seek out a pastor, counselor, or professional if needed for support and guidance.

Here we go…

This is for any woman (note: it may be helpful for guys too) regardless of your relationship status. The woman who is single, in a relationship, married, divorced, lost, overwhelmed, exhausted, emotionally tapped out, ______ insert a “label” here, friend this is written for you. I do write from a marriage based place, however almost any relationship (family, friend, dating, etc can replace where I share about marriage and spouse.

#1 What does is your faith journey look like? Yep, I went there.

This is something only you can answer. Is God your true anchor, rock, and firm foundation? If yes, that is awesome! If your answer is mostly, partially, or occasionally, then my friend this is your starting point. I highly recommend joining a bible study, going to church, and spending daily time in His word (the Bible) to kick start your faith journey. This one act will bring your most important relationship back into balance. This one action is life changing! It also disables the devil. Those attacks from him on you and your life will diminish when you seek out a strong relationship with your Heavenly Father!

Relationship transformations happen through a strong relationship with our Heavenly Father. Trust me, I know this all too well. To be blunt, my faith life was an epic disaster, and I was the only one who could do anything about it. I professed my belief when it was all looking good… you know praising God for my blessings when big stuff happened and I rode in the boat that occasionally followed the light. Mostly when it was convenient and fit into my plans. However, I was the one rowing and steering that boat. I planned, prepared, and made sure the life preservers were all on board, but often forgot to grab ahold of my Savior, the one true life preserver.

It all came to a screeching halt a few years ago. Our marriage was in a season. It was uncharted waters and we’d never experienced anything quite like it. I’ll be honest. I was so furious, frustrated, defeated, emotionally drained, and totally lost. At one point, I acted like a toddler carrying on in a huge tantrum. I yelled, begged, cried, and pleaded with God to give me what I wanted, and to do it right now. Haha the joke was on me, we all know that’s not how it works!

I sought out help from a professional who was certain that things would work out as God intended. This person helped me to realize that I needed to make some changes. I had to work on my relationship with God before He could work in our marriage. Facing the music was tough! I realized I had to take the first step, reaffirm my commitment to my faith, and stick to it every day. All of my relationships (friends, family, & marriage) began to change for the better when I got this one piece back in balance. When I put God back where He belongs. In the #1 spot! This took me some time to figure out because I struggled with putting my family, husband, and friends first. I learned that when God is seated in the #1 position, and we give Him all control; that is when He works miracles. Our marriage is living proof!

#2 Are you focused on everyone else and doing for them all day long?

As a caregiver for a family member with special needs, I am extremely aware of what this looks like. I live it every day. One of the biggest battles I’ve faced due to the medical needs of our special needs child is loosing myself. I did not realize it in the moment. I was so consumed with the doctors visits, medical needs, educational delays, specialists, what the future may be like, and the “lack of progress”.

It was an easy place for the devil to penetrate my relationship with God and in my marriage as well. He had a foothold and put so many negative thoughts in my mind. As a result, my “blindness” to what was going on around me caused me to ignore my own needs, not see my husbands needs, I pushed him away, pushed family and friends away, got quiet and distant from everyone, and I isolated myself from so much including my Lord and Savior… it is a terrible place to be.

The good news is that He is waiting for us to take one tiny step towards Him. Even if we think we can, dear friend we cannot hide from Him! “Who can hide in secret places so that I cannot see them?” declares the Lord. “Do not I fill heaven and earth?” declares the Lord.”

‭‭Jeremiah‬ ‭23:24‬ ‭NIV‬‬

At one point I stopped spending time with family and friends for fear that others would not care for our child in the way he needed. When a friend would invite me out for a girls night, I’d find an excuse or let the person know I would look for a sitter and get back to them, but I never got back to them. I conveniently forgot. OR I would rush through a grocery store trip in fear I wouldn’t be there to care for our child if he needed me. When my husband was doing an amazing job of caring for our child.

Oh how I lost myself! My faith in God was at an all time low. I was down right miserable. Once I realized that my God relationship was flawed; the path became straight again. It took a lot of work, I still struggle occasionally, but He showed me the way. He held my hand and walked with me. Sometimes He carries me! I know He does the same for you!

Perhaps this is not at all similar to your story, but maybe you need to refocus yourself on God, grow that relationship stronger, and start putting others and yourself second after God. This is so important. Putting Him above ourselves, and above everything else sets everything back into balance.

I must warn you that this is not a one day, few days, or even a few weeks and then you go back to the same old routine. No, this is a life long commitment; a covenant with Him. Put Him back where He belongs and watch your relationships and your life thrive!

#3 Do you have regular pity parties, gripe sessions, negative thoughts, or spew negative words occasionally?

Friend if you are fighting, griping, whining, dictating, pushing, and/or not loving on your mate like he deserves; something is out of balance! You must put an end to the cycle and refocus. The ball is in your court! God is waiting for you…All of you. He wants to have that relationship that you deserve.

One of the best and yet quite difficult things I have done along my personal faith journey is to pray and ask Him to “search me and show me where I am wrong”. Praying Psalm 139 has been a HUGE journey, sometimes battle, and mostly a wake up call! I encourage you to give it a chance in your life! Take a week and pray it over your life daily, I dare you!

“Search me, God, and know my heart; test me and know my anxious thoughts. See if there is any offensive way in me, and lead me in the way everlasting.” Psalm 139:23-24 NIV

#4 UNMET expectations…

Your spouse is not a mind reader. This one deserves to be re-stated, mostly for me because I tend to forget that HE’S NOT A MIND READER! Let’s face the music ladies; we are women and we do change our minds on occasion. Cut the man some slack. Give him a break. Take and make time for him. Make him important (after God) and show your love for him! Drop those darned expectations of what he should do for you at the door of your marriage! Do the things for him that you’d like him to do for you. Plan the date, take the time, set the mood, and take that step to talk with him about what you need, like, and desire, and be sure to ask him about the things that are important to him. Find out what he needs from you to have a strong relationship. Put your unmet expectations away. Better yet, give them to God and let Him have it all. Then as you pray, be ready. He will cause a change to happen… but remember it will take place in His time, in His way, and for His purpose!

#5 Give up the control rut.

You know that thing where you’re doing it all, making it all happen, planning, running yourself ragged, and fighting with Him (God) for your slice of the pie. Friend, I am gonna let you in on a little not so secret tidbit of information; you…are…not…in…control. Even when you think you are, the fact is that you are not! So give it up, drop that stress, drop to your knees, fold your hands, and give it all to Him… the one who reigns above all. He is in control. ALWAYS. So stop trying to be the big woman on campus. Pray and trust Him with everything!

Did you notice how all of this points back to #1? God is, has always been, and always will be #1. We are human. He knows our faults, He knows we will make mistakes, yet He loves us unconditionally! We must place Him back in that position. When we do this in all areas of our life without hesitation or reservation, everything will be in balance again. He is our Heavenly Father, and He is a father who loves His children unconditionally. He will forgive you. He is waiting to welcome you with arms wide open!

I’ll leave you with this last piece of advice and encouragement from a dear friend and mentor who is dancing in heaven with Jesus. Sister Janet said, “When you’re down and out, feeling like you can’t take anymore, struggling with any issue in this life; you only need to do this simple thing. Stop trying to do it alone! You must get to your quiet place, quiet your mind, picture Him standing in front of you with His hands stretched out towards you……..

Then, take a deep breath, and JUMP into His hands! He will take it all, He will help you navigate through the circumstances, He will make things right, and He will carry you. You only need to trust Him and JUMP!”

My friend… trust Him and take a leap of faith! I pray you will put Him back in the #1 spot where He belongs and you see how He is working in your life!

© Sarah Jenson and In the Thick of Life, Blog, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Sarah Jenson and In the Thick of Life, Blog, 2017 with appropriate and specific direction to the original content including a link to the original content.

One Thing at a Time

Parents of all ages… we have one thing in common. A goal of raising competent, loving, strong, well rounded future adults. I think we can all agree that the three R’s are an important part of their life and education. They work very hard learning all day long. All too often they are working on soaking up the information in many subjects at once. Reading, Writing, Arithmetic, Science, History, Geography, Extra credit courses… not to mention sports, fine arts, youth group, and any other activities they are interested in. Gosh, they are constantly learning new things. This is good! It can also become very overwhelming. We have instilled in our children the importance of tackling one thing at a time, while making time for God, and grattitude for the experiences.

I am going to go out on a limb here.  I know that I may get some flack for it but, hey, this is my blog… so as such, it is also my perogative (insert Bobby Brown’s hip-hop song), and I will do what I wanna do. 🙂 Perhaps some of you reading this have no clue what I am talking about here.  Go… Google Bobby Brown, My Perogative. Get your jam session on and come back here to finish reading.

I believe that there are some equally important things to teach our kiddos that will carry them through their adult life and might even impact future genrations. It is true that there are the “life skills” like how to change a tire, financial management & budgeting, balancing a checking account, or how to boil water without scortching the pot. I will admit, that was one of my very important “life skill” lessons. I will never ever do that again… that pot was very expensive! OOPS! While those skills are all critical to “adulting” I wonder if you would consider these:

• Placing God above everything and everyone
• Faith and trust in God to provide
• Self sufficiency
• Flexibly
• Empathy
• Good character
• Respect
• Hard work
• Dedication
• Quality workmanship (taking pride in a job well done)
• The fine art of “sticktuitiveness”. Seeing a project, job, or even a promise all the way through regardless of how hard and crummy it gets
• Always stick to your values
• Lessons learned from failure
• Overcoming rejection and disappointment
• Unconditional love
• Keeping faith through the ups and downs
• How to live and thrive without your parents

Sure, there may be opportunities in the public school setting for some of these to be learned. Might I add that these beautiful children were a precious gift. They were placed in our care for us to nurture, protect, and guide. As their parents, when the opportunity presents itself for us to teach those extremely important life skills; I believe that we should be ready to jump on it. Think of the awesome memories that they will have of their parents teaching them valuable things. As a result they may one day be in a position to make a difference and impact another persons life. What about the memories we will have to share with our future grandchildren. While I often feel we could have done some things differenly in raising our children; I absolutely love the life lessons we have been able to share with them.

We were blessed to share this life with them. It is our duty to bring them up to be competent adults who can do all of the things they need to do AND to be able to provide for their children one day. As painful as it is to type this (and I am certain it also difficult to read)…. to do all of the things they will need to do without us.

It is our job…
-To instil values that will withstand their lifetime.
-To share traditions and stories from the past.
-To teach those valuable life skills so when they are on their own without us some day, they can live and enjoy their life.
-To be the parent, caregiver, and at times the hard job of disciplinarian.
-To sift all things through God’s way not the worlds.
-To teach them by our example how to do ^^^^

I wrote this post for a few reasons:
-As a gentle reminder to our children why we are the anoying, sometimes difficult, strict, and occasionally hard parents we are.
-One day they may read this, and maybe their kids will as well.
-For the parent struggling with any part of the difficulty that often comes with parenting.
-Perspective, for us, as well as maybe for someone out there who needs to read this.
-A reminder to ourselves what our end goal is in having these beautiful little or not so little humans in our lives.
-Because I needed a reminder. Yes, even us seasoned parents need perspective.

They… are…. each…awesome Blessings from God!

It is our job to help them grow strong in their faith so they can be the best adults possible one day! We only have a short time with them before the world becomes their playground… without us. I know I don’t need to remind you that we each have a limited amount of sunrises and sunsets. I pray we all make each one count, taking each lesson one at a time, while leaning on God to sift it all out in His way, letting Him guide us, and making the most of each day we have together!

 

© Sarah Jenson and In the Thick of Life, Blog, 2017. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Sarah Jenson and In the Thick of Life, Blog, 2017 with appropriate and specific direction to the original content including a link to the original content.