Pondering FASD — Speech Adventures

I am sharing this Blogpost from https://speechadventures.com/2019/01/19/pondering-fasd/ because it is a great write-up, and this topic is so very important for all parents to learn about!

Recently I had the opportunity to take part in a webinar on speechpathology.com (if you aren’t a member and want to join, feel free to click here [disclaimer: I receive a credit toward membership if you join after following that link]). The webinar was on Fetal Alcohol Spectrum Disorder and how to improve outcomes, presented […] (Follow the link above to read more)

via Pondering FASD — Speech Adventures

An Open Letter to the Women in My Life

Focused on life, our youngest’s health issues, and life in general. I kept my personal health issues to myself and lost out on a lot of life’s important moments with the amazing women in my life.

This one is not for the guys to read… this is an open letter to all of the women in my life who I let down throughout the years.

I was silent for way too long about my health issues. To be completely honest, I was so focused on our children, our youngest child’s health issues, and consumed with life in general that I simply delt with my health problems as best I could. Looking back, I realize I didn’t deal with the issues well; instead I brushed them aside and shoved it all under the rug. I went through the motions of each day, because that is how I learned from a young age to cope with pain. I lived with this issue because I was taught to “suck it up and move on, it’s only a few days”. The reality is that I was barely hanging on and getting by. Somewhere along the way I lost myself.

I….lost….myself.

Reading that again makes me so sad. If I could do things over; I would have put myself first more often, and I would have pushed the docs for answers sooner versus accepting medication after medication and multiple inaccurate diagnoses. I wouldn’t have allowed myself to get so lost and sick.

Look, I know everyone has their cross to bear, personal issues, marriage stuff, etc. I want to be very clear here; I am not trying to use my illness as an excuse or for any amount of sympathy. I do not want that! Please do not try to give me any. I am writing this in an effort to share what I have gone through for the past 20 years in an attempt for you to understand why I was always sick, busy, snappy, crabby, rarely seen in public, and not present for so much of our relationship. I pray that you can eventually accept my apology and leave the past in the past so we can move forward.

My amazing husband is the only person who knows all of what I delt with on a day to day basis. Bless his sweet heart! For half of my life (and his), I delt with mennorrhagia, PMDD (premenstrual dysphoric disorder), a crazy huge uterus, endometriosis (didn’t know untill after my surgery), pelvic floor disorder, two periods a month with spotting in between (I was lucky to have 8 period free days a month), and constant pain. Yes, you read that right, 8 period free days and then wham bam no freaking thank you; Aunty Flow was back again and always showed up with a vengeance! Seriously, it was terrible unbearable pain, frequent migraines, low ferretin (iron), exhaustion, muscle cramping and fatigue, confusion, low energy, and some major insanely crazy mood swings.

Now, as you know, I am a classic type A personality and “fixing things” or challenges are right up my alley. This was so hard for me to deal with. I knew something was so wrong but was not able to fix the problem. I researched often and tried everything I could to get back on track. I prayed, took supplements, ate super clean, exercized 4-5 times a week, reduced stress, eliminated sugar, eliminated chemicals from our home, tried the fad diets, used all the oils, took special hormones intended to balance mine out, got an IUD and removed it, tried oral birth control, used special lotions, removed all possible hormone interrupters, saw so many doctors and specialists, did many tests, and nothing worked. NOTHING fixed the issue. Ultimately, I had a hysterectomy to put an end to the torture that I and everyone that I love endured with me.

We spent so much time and money trying to get me healthy and better, yet my body was an utter disaster and there was nothing I could do to fix me. It often felt like a war was going on inside my body that I would never get under control no matter how hard I fought. I also delt with moderate depression because of the pain.

I didn’t complain about it, or tell anyone about it. I was raised with the idea that you deal with your problems, never let it show to others, and simply get on with life. “Mom’s must be strong and don’t have time to let illnesses or pain stop us”. So, that is exactly what I did. Well, that is what I tried to do. There were many days I couldn’t hold it together let alone keep my pain from affecting any part of life. No amount of pain pills made me feel any better.

We scheduled life around my cycles… literally everything was planned around it. Our trip to Cancun, date nights, intimacy, holidays, spending time with friends, our kids graduation parties, and towards the end, even grocery shopping was planned around it. I am not joking, freaking grocery shopping was a feat to schedule in life; it really got that bad. It was terrible!

So, now you know. My girly issues… this is why I often said I couldn’t make it, or I didn’t show up.

I felt like no one would have understood if I would have said, “my period is too heavy”. It was easier to say, “I can’t make it or I don’t feel good”.

I am sorry! I wish I could have fixed it sooner, or atleast had the inner strength to tell you what was really going on. Atleast you would have known. But, that is in the past. I cannot change it.

I often think about all the awesome things I missed.

You needed me and I couldn’t be there by your side.
You had so much to celebrate, but I missed the parties.
You needed a shoulder and a girls night out, but I was not able to be there for you; I was not a good friend.
Marriages, children’s births, special celebrations.
Your kids growing up.
Being the friend you needed and deserved.
I completely understand that you are mad, sad, hurt, pissed off and dissapointed.
All of the special times… I missed so much.

I am so sorry!

Seventeen months ago I went into surgery to remove my uterus. It has taken me all this time to heal, find the right words to say, and accept that I did the best I could. In the past year plus, I’ve been trying to make things better for my future and I am working hard at finding myself again. I lost way too much time because of my illness and stupid broken plumbing. I intend to do all I can to live the rest of my life to the fullest and spend it with those I love the most. I want you to know that I love you, I value you and our relationship, and I want to be here for you and will do all I can to make the best of it.

If anyone reading this can relate, I urge you to keep asking questions, research, dig, keep pushing the doctors for answers. If your gut tells you that something doesn’t seem right; stand up and fight for your right to a solid answer. Most of all, I pray that you know that you are worth it and you deserve a better way of life!

~Hugs~
Sarah

© 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.

Homemade Wheat Burger Buns…PERFECTION

There is something amazing about the smell of yeast, dough rising in a warm oven, the sweet smell of bread baking that fills the entire home, and a smile on everyone’s face when they bite into that warm, fluffy, round, sweet, handful of yumminess filled with a burger and toppings! It…makes…me…so…happy. I know, it is a bit corney, but truth be told, I enjoy pretending to be Betty Crocker occasionally. However, all to often I encounter recipes that flop, I refuse to share those with you. I’ll spare you the torture that my sweet family has endured through my recipe testing endeavors.

Until now, all of those supposed “amazing recipes” I’ve been blessed to try from others ended in one of these scenarios:
1. I send this text to my hubby, “will you please stop at the store and pick up buns for burgers tonight… the recipe failed”.
2. We attempt to eat the buns and resort to throwing them in the trash and we put the burgers on slices of bread.
3. We eat the burgers with no bun at all! This is a great option for those days we are keeping our carbs low, but sometimes a girl NEEDS fresh burger buns.

All of those scenarios are not my idea of a good time in the kitchen. My poor family has endured so many recipe flops! Aggh, so frustrating. All I wanted was to serve my family something from the heart, with good wholesome ingredients, and no extra crapola in it. Okay, yes theres a little sugar in there. I will one day attempt to make it with honey and see if the substitution works. For now… the recipie below is perfection in my eyes! It is kid and hubby approved and it was fun for me to make. Read: kneading dough can be a great stress reliever.

Side note, they are also delicious the next day (if any are left), so if you must prepare it in advance it will hold up and taste as amazing later on! Our boys used the leftover buns to make sandwiches for the next couple days after these beauties were made. They tasted so darn good, it truly was a miracle that there were any leftovers!

The recipe is a twist of one I found on a friends blog. Keep reading to the bottom for my version of this amazing recipe if you want to give wheat buns a try. Head over to A Farmish Kind of Life for the original recipe. On her blog (again click the link), Amy gives a great step by step tutorial on how to bake these delicious balls of amazingness. I did not take the time as she has already done this for you. Why reinvent the wheel? 🙂

As you’ll see in the recipe below, I tweaked her recipe by substituting wheat flour in place of some of the white flour. When subbing wheat for white you do not need quite as much, hence the 3/4 cup listed in the recipe. I absolutely LOVE the brand Montana Wheat flour. In this recipie I used a combination of 1/2 white & 1/2 Whole wheat flour from this company. IMPORTANT NOTE: I DO NOT get any compensation for sharing this brand… I truly adore the flavor , the company is family owned and operated, and it is proudly certified NON GMO! This is a big deal to me when it comes to serving my family healthy food. Scroll down for the wheat version of this recipe.

Wheat buns
Proofing in the oven
Homemade buns
Kid approved perfection

 

The only thing I will do different next time, is to bake only one sheet at a time. The buns on the bottom got a little more done than we prefer. The bottoms of the bun should be soft and moist, not crispy brown.

Homemade Wheat Burger Buns

Servings 2 dozen buns

Ingredients

  • 2 cups white flour (I love Montana white & wheat flours)
  • 1 3/4 whole wheat flour (see above)
  • env. yeast, OR 5 tsps. bulk yeast
  • 2 cups warm water, (shoudl feel warm to the touch, 110 degrees)
  • 3/4 cup coconut (or any prefered oil, melted)
  • 1/2 cup sugar (I have not yet tried with honey – stay tuned)
  • 1 Tbsp. salt
  • 3 eggs (room temp)
  • 3-4 cups additional flours (keep a balance of about 1/2 white & 1/2 wheat)

Instructions

1. In a large bowl, combine first 3 3/4 cups of flour with the yeast. If you are not using instant yeast, you will have to add the yeast to the warm water and let it sit for a bit (5’ish minutes) before adding it to the flour to get the yeast activated.

2. In a separate bowl combine water, melted oil, sugar, and salt.

3. Pour wet mixture into dry. Add three eggs (room temp is best) and mix with a hand mixer for three minutes.

4. Slowly stir in an additional 1-2 cups of each flour to mixture by hand. Try to keep the addition of flours even. You’ll know when you have added enough flour as the dough will simply not accept more flour, it will become a nice ball of dough, and it will not be sticky.

5. Turn the dough out onto a floured surface and knead for 8-10 minutes, adding more flour if necessary to prevent sticking.

6. Place in a greased heat safe bowl, cover with a clean dish towel or plastic wrap, and place in a warm place to rise for about an hour. (NOTE: I set the oven on 170 then when it hit temp I turned it off and put the bowl in the oven- this is a great place to raise dough).

7. After an hour, punch the dough down and divide it into three parts. Let all dough rest for 5 minutes. This time on the countertop is fine.

8. Divide all three balls of dough into 8 smaller balls of dough; shape into 24 cute little wheat buns.

9. Squish each bun a little bit flat between your palms and place on greased cookie sheet. Let rise in a warm place another 30 minutes. (Again, warmed oven works great).

10. Remove raised buns from oven.

11. Preheat oven to 375.

12. Bake on top rack only (to avoid browned bottoms) at 375 for 15-18 minutes. In my oven 15 minutes was perfection, but yours may be slightly different so the first time you make this recipe I would suggest watching them closely after 12 or so minutes.

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.

Is the behavior we see simply the result of how his brain is wired?

It can be sooo difficult to determine what is going on in the mind of a child with developmental disabilities. So often the child is not lying, forgetting, or being defiant, but rather they are thinking of something completely different than we are. Please don’t mistake me here, lying can and does happen and I will be the first to say our children are not saints; this post is not about that. My goal is to share some tips that have helped our child when his brain is not making the connection, so we can help to meet his needs and reduce the frustration. I hope the tips that follow are helpful for you or another caregiver, and maybe they will empower the child who feels frustrated, confused, and lost in this busy world we live in.

I have heard and often said to others to think of our son’s brain like that of someone with Alzheimer’s or dementia. They know what they want/ need, yet in that moment they cannot access the words that are in a particular file of their brain to share with us what it is. The words are there, the picture is in their brain, yet it cannot be verbalized at the moment.

Take a moment and imagine this. It must be so very frustrating for the person trying to navigate the world that is moving so fast and changing by the second. As their caregiver we must try to help them piece it all together and stay calm and focused.

WOW! What is a caregiver to do?

This may not be the same for everyone, however our son has said many times that his “thoughts are like pictures”. He needs constant visual cuing reminders to do the things he needs to do, go to certain places, find things, wear weather appropriate clothing, complete a task, etc. Often he needs reminders that keep him safe as well. As caregivers, we must “paint the picture using descriptive words” that help his brain understand. He does not think ahead to what the weather is like outside and to make matters more difficult for him, he often forgets where things are, so we must think ahead (be his external brain), and help him put 2 & 2 together. It is important to note that we do not do the work for him. However, if we don’t paint the picture, he will walk outside wearing inappropriate clothing for the current weather! His brain will not compute that it is cold, wet, or even too hot outside for what he’s wearing. Also, he may think a task is finished when in fact it is not because he didn’t “hear” (understand) all directions or steps necessary.

It…is..so.. important to break it down. Below I’ve listed examples of situations we’ve encountered and ways (verbiage & physical cues) that may help a child in your care.

Ideas that may help:

When he says, “I don’t have my water bottle with me” we often remind him of where to look for it because we know he brought it. We say things like, “let’s look ___(place)”, or “I saw it ___(place) let’s go there”, or “I remember we set it down in the ___(place) maybe it’s still there.”

If he can’t find an article of clothing, we will remind him to “check the bottom dresser drawer”. Or “retrace your steps”, or let’s go look ___. Like in the water bottle description.

He often mixes up left and right, so reminding him with a visual cue holding up my left hand & making an L with my index finger & thumb (left), or holding up only my right thumb help paint the pictures of the direction he should go, look, etc.

When he writes in reversals (dyslexia), we don’t say something is wrong here, or that’s wrong, or any negative remarks. Instead, we gently remind him to review his work for reversals, capitalizing, and punctuation. If he misses it that’s okay because he is doing his best in that moment!

When eating or doing a project, he may “forget” a name of something he wants, so giving descriptions is helpful. “Do you want _____ (condiment) on that burger?” “Do you want red or green construction paper for your project?” “My brain doesn’t understand, can you tell me what that looks like?” Or even “What is its color or size?”

Weather: Going out of buildings dictate a need for proper clothing. For our son picture cues help jog his memory. We have a stop sign posted above the front door handle. We often remind him as he gets to the door to look at the picture on the door, and look himself over for outside gear. Then if he isn’t sure what may be needed, we will say “Your green Castle jacket (replace with other descriptive verbiage) is in the locker (other area), let’s put it on, it is cold/wet/ raining/snowing, etc.” That stop sign is also a cue to stop and let us know that he is going outside. This has helped him feel independent yet keeps us in the know of his whereabouts.

A few other phrases we’ve used are “Did you notice how wet/muddy/rainy it is outside? What gear would protect us today? Let’s go get that on before we leave.”

Projects: Today we are working on____(subject), it has several steps so let’s break it down in small chunks. The directions say First____ (one step). Next____(one step), then ___(one step), etc… only give one direction at a time until all have been completed. When all are completed look at the finished project and give praise for a completed piece of hard work!

Self cares… showering, hand washing, teeth, hair care, etc. follow above steps in a “First, next, then” order… give directions one at a time after each step is completed.

***it is so important to watch for frustration, confusion, uncertainty as they complete tasks, chores, or homework. Give a brain break, movement, etc as needed before things escalate and they shut down, so they can de-stress, unload the frustration, and be able to move on to the next step.

Safety: Crossing parking lot/traffic. Yes, even at a physical age of almost 13, our sons brain forgets critical steps to safety! This is FASD and brain damage at its finest. We often have to grab his hand, shirt, or coat to pull him back away from moving vehicles. As we get out of the vehicle we give specific directions one at a time. Close the door, stand by the truck/car, wait for us, look both ways, it’s safe to cross together, great job!

Since their brains are wired differently, it’s important to keep in mind that they may connect the words used to describe something today or in the present moment, but not in the future. For instance, today they may understand “jacket”, but tomorrow rain jacket green castle jacket, or winter coat will jog their memory and paint that image/picture of the proper clothing needed to go outdoors in the frigid weather.

Our children are unique. They did not ask for this condition. They cannot fix it. We must adapt, create safe environments, and help them navigate our rapidly changing and moving world to their pace and their individual needs. You cannot for a square block into a round hole. Our children are beautiful gifts to us and this world. They can be successful, but they need our support, Love, understanding, and guidance.

Here are a couple links for further reading on how FASD brains are wired.

https://www.mofas.org/2013/08/fetal-alcohol-spectrum-disorder-fasd-and-confabulation-a-basic-understanding/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2582737/

Note: I plan to come back to this post to update it as situations arise. I invite you to leave a comment with your thoughts, what has worked for your child, and any other things you have to share. And feel free to share this post, but be sure to provide credit to the blog with a direct link back to this post 🙂

Thanks for reading!

© 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.