Alert Me Emergency Bands

There are as many opinions out there about "labeling" a child, as there are people. Some say do, some say don't. Some say it shame's the child, encourages bullying and causes people to view the child by his diagnosis instead of a child.
   I might be wrong but I don't think hiding your child's diagnosis behind a brick wall is going to help anything or anyone, especially if you cannot tell the child has disabilities. Take Joseph for example, he appears healthy, looking at him you wouldn't guess he has a handicap but if you watch him for awhile, you will soon see that he isn't on the same level as his peers.
    Joseph will go with anyone who is nice to him, and that scares me. Teaching him "stranger danger" is useless, he doesn't get it for the same reason sarcasm is lost on him. One day one of the children was following me around the house chattering and getting underfoot, so I told them to go fly a kite, jokingly of course. Joseph got all excited...he thought I literally meant to go fly a kite.
   Children with FASD are extremely literal. One mom shares the story of teaching her son to cross the street. She explained that you must always stop. look and listen. The she told him to cross the street while she stood nearby to watch. He stopped, looked and listened before he crossed to the opposite side, then turned and ran across without following the rules. When mom asked him why he said, "You never said I have to stop, look and listen when I come back across." 
   Joseph is a big boy and when we go to places that offer activities for the children, I run into a problem. For instance when we went to Cherry Crest Farm, we went on a small wagon ride. I asked the attendant to help Joseph climb in, he gave me an odd look  before helping Joseph climb in the wagon.
    Joseph enjoys activities that are designed for children several years younger than himself. Sometimes I simply place him with a younger age group and when I get the raised eyebrow, I either pretend not to notice or try to come up with a suitable explanation. So far Joseph hasn't caught on when people do that but one of these times he will and I want to spare him if possible. 
  After a mom shared how much less explaining she had to do when her daughter wore her "Alert Me Band," I bought one for Joseph. It will tell the public he has special needs without me having to explain. I also hope it will be a safety measure if he were to get lost or hurt.
                          

                       Here is the website, so you can buy one for your little one. I didn't have an opportunity to try Joseph's out yet. They are designed to make it difficult for a child to remove them but since I have no experience with such things, I cannot vouch for that aspect of the band.

What Is The Christian's Responsibility?

    My most recent pondering's were spurred by a variety of things, including the book, "There Has Got To Be More. By Melissa Eby.

 I have been pondering earthly wealth versus heavenly wealth and wondering how God views me. Am I a materialistic person? I would like to think I am not but I struggle with covetousness and as much as I dislike that battle, Satan knows it is one of my weak points and is constantly reminding me of the things I wish for. Sometimes the battle rages for weeks, sometimes day and other times only a few hours before I get a grip on my thoughts and bring my sin before God.
  
But anyway, enough of that. My question is: Is it our  right to lead a comfortable life? I don't think we deserve it, we may have been blessed with it but we haven't earned it and if that is the case, where does our responsibility to our fellow man lie? Is tithing 10% enough, is sponsoring an orphan or giving a monthly payment to missions all that is required of us?

Or is God calling us to leave behind our comfortable lives, our good paying jobs, nice houses and our hobbies. Are the fields white for harvest while we sit and lead comfortable lives. Oh sure we support missionaries because we know they are doing a good thing but deep down are we glad God called them and not us. 

Have we fallen down to the level of the Rich Man in the Bible? Is Lazarus lying on our door step while inside, we are living a life of ease? There is so much pain and tragedy in this world. So many people who need a mentor, someone to come alongside them, to believe in them. Someone who will lead them in the path's of Truth, if we as Christians don't come forward, who will? It is so much easier to just avoid the messiness of sin, broken lives require so much time, time we don't have, or aren't we using the time we have correctly?

I am not pointing fingers, simply sharing what has been weighing on my heart. I recently had the opportunity to spend time with some of these needy, broken people and I will admit, I cringed at the thought of making myself available, they would be sure to take so much time and energy, but what better way to use my time and energy than to share the Gospel and help the hurting find healing through Jesus Christ?

First Day Of The 2015-2016 School Term

....It is that time of year once again. We dig out back packs, lunches, get back into an early to bed early to rise schedule and reacquaint ourselves with the stress school brings into our lives.

6th grade and 2nd grade

7 years old

Trying out their new desks.

And last but not least, the little girl who will be mama's girl for one more year much to her dismay!

Please pray for us, especially for Joseph and wisdom for his parents and teacher. This week we saw a lot of behaviors that had been put on the top closet shelf, things we hoped were in the past. He had a rough week and I was unable to draw him out of his psychological distress, not easy for him or mom.

There Has Got To Be More

  I have just finished reading the book, There Has Got To Be More by Melissa Eby. Seldom do I read a book, "for fun" that speaks so loudly to me. 

     The story tells how Reuben and his wife Mary Ann bought a farm and poured themselves into building it up, about the time the farm began to prosper, they began thinking, "Is this all there is to life? Working as hard as we can just so we can buy what we desire, or as the author said, "Working so we can buy a new truck, then working so we can buy our 18 year old son a new truck so the next generation feels they need a new truck. Is this really what God wants from his children?" As much as I would like to deny that we live such a lifestyle, I know how stealthily my wants can become needs and before I know it, I am fretting instead of being thankful.

  The couple prayed, asking God for direction and he called them to serve at Faith Mission Children's Home, a home for mentally and physically handicapped children. A week before they were to leave, Reuben lost part of his leg in a farm accident. They were advised to give up their mission work but they felt that, even though they now had an excuse to stay home and live a more comfortable life, God still wanted them to go and serve.

   As the years passed they were called to serve in various countries and always, God used Reuben's handicap to speak to the people they were ministering to. 

    In 2010 when an earthquake devastated Port Au Prince, Haiti, many people lost limbs. Reuben and Mary Ann went to a hospital asking to speak with the patients but they were turned away because  so many reporters were trying to get inside to photograph the pain and suffering the people were experiencing. When Reuben showed the administrator his prosthesis however, the couple was welcomed with open arms.

   The patients were discouraged, some refusing to eat because they wanted to die. No one was able to reach them but when Reuben showed them that he to, was handicapped they listened. One patient said, "Healthy people try to tell us things will be okay but they don't have any experience. You are just like us, you know what it is like, you know the pain and suffering, so we know we can trust what you say."

  Reuben's testimony following that man's comment was, "God uses the broken to heal the broken. If we want to help other hurting people we must first be broken. Even Jesus had to be broken before he could offer us eternal life."

    Those words spoke to me, ingraining themselves upon my heart. This is one reason why Christians experience difficulties, we must be broken so we can meet the broken people of this world. We must be able to meet them on their level, showing them that there is hope and healing beyond brokenness and pain, we are living proof! What an awesome responsibility God has bestowed upon his children. Am I willing to embrace this calling, to do away with some of my wants so I can better meet the needs of the broken among us? Are you?

    

Broken Vessel
By Mark Edgemon

I began to clean the vase of Earthen shaped pottery,
That sat on my mantle throughout my life of days.
And when I did, it fell apart in my hands.
It couldn't take the pressure; weakened; so delicately made,
It's ruination was my misguided attempt to perfect it,
As I labored diligently to prepare it for use.

I mourned for the loss of my misshapen, clay vessel,
That had endured a multitude of nicks and cracks throughout my life,
As I continued working on it from my earliest days.
It reminded me of the pain of my youthful indiscretions
And the trials through my adult life, as the years rapidly whisked past me.
It represented everything I had become and thought I would ever be.

One day, broken and in pieces, I fearfully took it to the Creator
Asking, "Can you fix this? Do you have the power?"
In a word, He said, "Yes", then smashed it to my unexpected horror.
Confidently, He began grinding the shards of the pottery;
Pounding them furiously until there was only fine dust remaining. Unrecognizable.
I grieved for my loss, realizing for the first time that I WAS that vessel.

I asked myself, "Could He not have understood what I had wanted? Did He not care?"
Purposefully and with determination, he reconstituted the dust with living water;
Molding; shaping; reforming my former vessel with His healing Hands,
Until the pale, earthen vessel was reshaped. And then, He shoved it into an oven,
Surrounded it with heat no human could endure, but under His watchful Eye,
Until the new vessel brilliantly reflected it's Creator's Image...and now, so do I.
 

Our Cabin Trip

The cabin 

This is what kept the children occupied

Kobi had to ride in the back after slopping in the creek

Excuse the mess....mom was on vacation.

We went out for ice cream Saturday evening.

We ordered small cones and this is what we got.

...Now we need to think school, which begins on Wednesday and has my 7 year old's in a dither. Kiana copes with anxiety by acting out and Joseph's ability to function is simply missing in action, which makes my life a joy. Oh well, they are teaching me patience and that is always a good thing. 

                                   

Where Is MOM?!!

     I read somewhere that children with FASD process things orally, they say what they are thinking to help them put their thoughts in the correct brain boxes or something like that. 
  The more over stimulated Joseph becomes, the more he talks, nonstop, continually, incessantly, on and on. You get the picture.
   These children are a lot like toddlers who need to constantly know, "Where is mom." If Joseph is playing and cannot see me he continually checks to make sure I am still around. This is partly due to trauma, one mom left him, I might do the same. I am his home base, if he knows where mom is, he feels safe. On his good days, he is able to play without continually checking in but on those days when he is overstimulated or his brain isn't functioning well, he can hardly play out of my sight because he is continually making sure I am still there.
   Even when we are in the same room, it seems he needs to keep checking in, is mom still there, as though he cannot trust his eyesight, he needs the verbal back n forth to assure himself that "mom hasn't left me."
   Knowing all this should make me patient and long suffering but I admit I struggle with the, "MOM, MOM, where are you? Mom, did you know? Mom what are you doing? Mom, mom, mom....!!!!!
    Joseph made a tent in his bed using his blankets. He then strung another blanket from the boards that support the top bunk, making a hammock. He had so much fun but MOM was out of sight. He came running to the kitchen to check up on me every minute or so, literally. I would hear his heavy footsteps coming and soon, "MOM, I only need to hang up one more blanket then my tent is finished." A few moments later, "MOM I finished my tent." Then, "Mom, I wish I could have a light in my tent, may I have a battery to use to make a light? 
"Mom, is it still day time?
"Mom, when will it be tomorrow?"
"Mom, the phone is ringing."
"Mom, Lia is crying"
   ....and on and on and on. I was tempted to tell him that "MOM" was out for lunch, please try back at a later time." 
  

I seldom hold my two 7 year old's at once but one night they were both in tears, inconsolable in fact, and in an attempt to draw them out, I rocked them both. They ended up laughing, which was what we wanted.

A belated picture from the canoe trip Dean and the boys went on the other weekend. Last year Joseph sat in the kayak with Dean but it wore him out so this year Dean bought a tube and towed him behind his kayak. Joseph loved it!

Training Kobi to ride in a vehicle.

Please Excuse Me While I Grieve

"Grief is a process." How many times have I heard that statement? I am only now beginning to realize how accurate it is. 

   I wish I could grieve once and get it over with but it comes in waves, sometimes there is a long break between waves and sometimes they roll in, one after the next without giving me time to catch my breath.

     I am fighting a never ending battle with grief. Sometimes I ignore it, pretend it isn't there, refuse to acknowledge it's presence, other times I embrace it and allow myself to feel the pain but I always stuff it back inside, never giving it time to wane on it's own.

    Grief has changed me into someone I don't even recognize, someone I don't like very well, I might add. I sometimes imagine this is how people with mind altering illness's feel, lost and trapped inside their body, constantly searching for the person they used to be, to no avail. 

   Grief has taken my joy, my laughter and turned it into bitterness and pain. Life isn't full of happiness when grief comes to visit. I can ignore it's presence but a heavy lump remains in the pit of my stomach, continually reminding me that sometime I will have to acknowledge this painful feeling.

   Grief is relentless, no matter how often I rebuff it, it faithfully comes back. I have used all the therapeutic methods to send him running but they haven't worked so well either. I am left feeling miserable, lost, trapped.

   Rationalizing grief doesn't work I have found, and trust me, I have rationalized it away more times than I can count. 

   I can tell myself that I didn't lose a child to death but grief say's it doesn't matter how you lost a child, just that you did lose one.

   I have tried telling myself to count my blessings but after counting them, grief still reminds me of the unfinished business that needs to be resolved.

  I tried therapy and the therapist said, "You experienced a lot of loss in your life, you must allow yourself the time and space to grieve." I didn't have time and I didn't have space, I had traumatized children who needed me.

  Now grief has come knocking in earnest and I am finally admitting defeat. I am done fighting, finished rationalizing and ready to let grief do it's work. I won't like it, it won't be pleasant but in order to heal emotionally, it has to be done.

   So please forgive me if I cry, forgive me when I seem distant and unable to do those things expected of me, forgive me if I talk incessantly about the pain in my heart, I will move beyond it but for now, I need to walk through it, distasteful though it is. 

  

The End Of The Battery

   Lia had an x ray done yesterday and the battery was no where in sight.
              

The pictures didn't get well at all but I decided to share them anyway. Lia was pleased with the "funny dress" she had to wear.

Waiting for the tech to read her x ray.

and a sticker for a job well done!

Tomatoes

          When I begin a task I have one goal in mind, "finish as soon as possible, no matter what it takes." That mantra has been quite profitable at times and other times, I push myself to the limit and pay for it later. Dean said he thinks I should have learned to pace myself by now but I told him it's hard to teach an old dog new tricks. Anyway this week we did tomatoes and more tomatoes.

   Tristan wasn't home so Kiana and I juiced them ourselves. We used an electric juicer and I allowed Kiana to push the tomatoes through. When we began working she told me, "This is the best day ever, cause I get to help, usually I have to stand and watch while Tristan puts the tomatoes in." After a few hours, her tune changed to, "When will we be done? May I take another break?"

   Kiana, Joseph and Lia  carried all the jars up from the basement. I canned 50 quarts of tomato soup and 40 quarts of juice, so they made a lot of trips up and down the stairs. I had to smile at their sense of accomplishment. They couldn't wait to tell daddy all about it when he came home.

                              

   This morning I canned 49 pints of pizza sauce using the juice I had leftover from making soup. I still had some juice to use up after I made pizza sauce. I was so tired of tomatoes I poured it into jars and got another 10 quarts of juice maybe I won't have to can much next year.

I have discovered my children are much happier when they are busy. Well, I knew that a long time ago but it takes so much extra effort on my part to make sure they keep at their jobs and do them right. Somewhere I read that our goal as parents is to work ourselves out of a job. In other words, take the time to teach your children to work so that eventually, they are able to do anything that needs doing and don't need to wait for mom or dad to get the job done.

   Going for an X Ray is on our agenda for this afternoon. We didn't find the battery Lia swallowed so now we need to make sure it has moved on and hasn't gotten stuck somewhere. 

ABC'S Of Back To School With FASD

The ABC's of Back to School with FASD

ADOPTION AND SCHOOLFETAL ALCOHOL SYNDROME 

  Posted by Kari Fletcher on 06 Aug 2015

I wrote this for my son’s teacher.

A. Alcohol. My child was exposed to alcohol before birth.

B. Brain. Alcohol use during pregnancy can permanently damage the child's brain.

C. Corpus Callosum. The part of the brain that passes information between the left side (rules) and the right side (impulses) may be damaged or absent with FASD.

D. DSI- Dysfunction of Sensory Integration. My child is sometimes sensitive to florescent lights, tags on clothing, visual over-stimulation, noises, smells, etc...

E. Emotional. My child can be very emotional and often has a low frustration tolerance.

F. Fetal Alcohol Spectrum Disorders (FASD), the "umbrella term" for the damage done when alcohol is used during pregnancy.

G. Give my child praise when he does something well or when he tries hard.

H. Hyperactivity. My child might have a hard time sitting for long periods of time.

I. Immaturity. Because of his FASD, my child may often act half his age.

J. Judgment. My child may exhibit poor judgment. This is from the damage to the frontal lobe of his brain and because of this he needs supervision and lots of reminders.

K. Kindness and redirection is far more effective than punishment.

L. Learn. My child CAN learn but he learns differently.

M. Mental retardation. FASD is the #1 cause of mental retardation in North America but most people with FASD have IQs within the normal range.

N. National Organization on Fetal Alcohol Syndrome - visit their website as well as those of their state affiliates! (MOFSA for Minnesota)

O. Other drugs. “Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus, resulting in life-long permanent disorders of memory function, impulse control and judgment.” (Institute of Medicine 1996 Report to Congress)

P. Parenting. My child’s behaviors may appear, to those who do not understand FASD, to be the result of poor parenting. Please be slow to blame and quick to consult me.

Q. Quiet time to regroup. My child has problems with self-regulation and may need a quiet time and space to calm down. Providing this will reduce unwanted behaviors.

R. Repetition. Memory issues are very frustrating for my child, repeat and re-teach often.

S. Sleep disorders. My child often has trouble sleeping, please understand if he is tired.

T. Time. Time is an abstract concept and my child does not "feel" it like you and I do.

U. Understanding. Understanding that my child has a disability rather than trying to change something he cannot control will make both his life and yours a lot easier!

V. Visual. Many people with FASD learn best with visual and hands-on type lessons.

W. Willful. Behaviors may appear willful...remind yourself often of the brain damage!

X. X-ample. My child needs examples of good behavior and appropriate role models.

Y. You will make a difference in my child's life. It is my prayer that it is a positive one.

Z. Zero alcohol during pregnancy. Please help me spread the word that FASD is 100% preventable!

© Kari Fletcher, MOFAS 2006 Kari Fletcher works from her home in Mankato as the Southern Minnesota Regional Resource Coordinator for MOFAS. Kari and her husband, Mike, have six children, four “homemade” and two adopted from the foster care system. Their adopted children, Ben, age 9, and Anna, age 5, both have Fetal Alcohol Spectrum Disorders (FASD) and Kari is passionate about educating others about this disability. Before joining MOFAS, Kari worked for several years under a project managed by the North American Council on Adoptable Children (NACAC) that recruited families for children in the foster care system. Foster care and adoption have always been a part of Kari’s life as her parents also adopted children from the foster care system. Kari’s four adopted siblings, now all adults, were pre-natally exposed to alcohol but never formally diagnosed with FASD.

If you’ve told a child a thousand times and he still does not understand, it is not the child who is a slow learner.

Someone shared this on an FASD FB group I am a member of and I thought it was exceptionally well written. I want to print this out and share it with Joseph's teacher. I think I will post a copy on my refrigerator as well. It will be a good reminder for me. Especially on days like today....it is rainy so everyone has to stay inside, we didn't have a routine last week because we were at the cabin and then Dean and the boys went on a canoeing trip.

   I knew better than letting Joseph stay up late while and skip naps while we were at the cabin but I got derailed by "mommy guilt" and loosened the safety reigns, giving him more freedom. After all, we were on vacation,surely he deserved to join in the fun. That is one of the things I hate about FASD, the child has to miss out on so many fun and exciting things because they cannot handle the extra stimulation. 

  One of Joseph's teachers said, "He does best when we don't do any extra activities, but it feels so wrong to make him miss out." 

   We walk that fine line every day...let him run and play like other 7 year old's or give him tight boundaries with adequate down time so he doesn't become over stimulated and can enjoy life. 

    What makes it even more difficult is that Joseph can appear to be doing well when we deviate from his routine or he becomes over stimulated but what you don't see is the meltdowns and emotional fatigue he experiences in the following days. As one mom said, "Yes, my daughter is handling this extra activity well, but the coming days will give us a much better idea of how she was affected."

    The children are playing doctor and things aren't going so well, the doctors and patients cannot seem to agree on anything. Lia claims both she and her baby are married and Joseph thinks that is the funniest thing he ever heard. Kiana said they will have pretend people in the waiting room so Lia and Joseph can wait longer, because that is how it is at doctors offices. :) Sometimes watching my children play can be quite entertaining!

My Daddy Is home!

    Trauma, does it ever cease to leave it's finger prints on a child's heart? Or is it one of those things in life where once you experience it, it remains imprinted in your DNA until the day you die? Can trauma hide under the surface of a child's psych only to rear it's ugly head one day or is it always visible? 
   Dean and the boys went on an overnight canoe trip with people from church on Friday evening and the girls' were a mess. I took them to Park City to do some shopping. We went to Bath N Body where I bought them each some hand sanitizer. Lia emptied her bottle by putting it on her kittens, she intended to put some on Kobi but I got her stopped in time.
   I also got Kiana some new school shoes...can it really be that time of year already?
   Anyway, we had several meltdowns while shopping, including stomping feet and yelling. I should have known why the girls were out of sorts but as usual the obvious evaded me, until Kiana said, "I just wish dad was home." Lia said, "Dad and the boys are away all night, I want them to sleep at home!"
   

Daddy is home and all is right in my world!

You should have heard the yelling and cheering when Dean and the boys pulled in the drive last night. They certainly received a royal welcome.

Cabin Fun

Finished orders!

The girls and I went out for frozen yogurt and did some shopping Friday evening while Dean took the boys to a truck show.

Sunday afternoon we left home to spend a few days at the cabin with my family. This was the view from the front porch. It was lovely, the mountains and creek refresh and calm me.

Monday we biked 18-20 miles. We packed our lunch and ate alongside the trail. I brought plenty of food and water along to keep us fueled. Lia rode in the bike trailer behind Dean and I biked beside Joseph. He loves biking but had never biked that far before. I was worried about him but with frequent rests, plenty of water and protein to keep him fueled, he made it!

Getting ready to hit the trail!

A deer along the trail

...and a bear! We also saw a rattlesnake. Kiana almost drove over it with her bike. 

Someday Dean and I want to bike the whole 40 miles of trail. Someday, when we don't have to pull bike trailers and worry about people falling off the side of the trail because they forget to watch where they are going, that is!

I don't have a picture of Kiana because the one I took of her didn't turn out well.

Lia really wanted to ride her bike on the trail so we went for one last ride before we headed home.

The children loved playing in the creek

  

A tired little boy

two gumballs!

Roasting marshmallows for s'mores. 

We had a very enjoyable time but as always, it felt so good to be home again!

Battery Ingestion Hotline and The Emergency Room

The other evening as I was getting the children settled for the night, Lia walked past me with an odd look on her face. She had her mouth pinched tightly closed. I told her she has to show me what she has in her mouth and she reluctantly spit a button battery into my hand. I scolded her, telling her that she could get very sick if she swallowed a battery. A scared look crossed her face and she said, "I already swallowed one!" I knew button batteries can be very dangerous so I quickly went online to look for answers. I found a National Battery Ingestion Hotline, here is the number to contact them: 202-625-3333. I called them and they were very helpful. They asked for the number on the remaining battery and looked it up in their database. The woman told me to go to the ER right away and tell them Lia needs an x ray of her esophagus to be sure it hadn't become lodged in there.  She explained that most ER's are up to date on battery ingestion but not to count on it and to have them call her if they had any questions.
   So I packed up my little girl, slipped on some shoes and we left. When we arrived, I registered Lia and we were soon taken back to get her vitals. By that time she was complaining that her throat hurt when she swallowed, which scared me. Thankfully they took us straight to the X ray department where we only had to wait a few minutes. Lia did an excellent job, she sat still and did exactly what the nurse told her to do. I was thankful because she can be a little ornery sometimes and I didn't feel like wrestling with her.
  The nurse led us to the waiting room where we then waited for another hour and a half. Lia was begging for something to eat and from the little bit I had researched while I waited, I knew that the battery could begin leaking in as little as two hours. It was now 2.5 hours since she had swallowed it and I was pretty sure they would have looked at the X ray ASAP and made Lia a priority if it was stuck in her esophagus so I assumed it was safe to give her a snack. She had barely finished eating her snack and was clutching a partly eaten package of peanuts she had found in my purse when they called us back. The nurse looked at Lia's peanuts and asked if she had eaten any of them. I replied that she hadn't but my heart sank, if they were concerned if she had eaten anything that battery must be in a bad place...and she had eaten other food a few minutes before. I decided to keep my mouth shut until I knew more. The nurse pulled out a gown for Lia and hooked her up to a monitor. I asked if they found the battery and he replied that the doctor would be in to talk to me. Then I was really scared! 
                     

  The doctor soon came into Lia's room and said they had found the battery in her mid stomach which was the best possible place for it to be. However, she wanted to consult the Pediatric GI specialist at Hershey before she discharged Lia. I gave a huge sigh of relief when I heard that. Half an hour later, she was back and said Lia may go home but I must keep an eye out for that battery. The next day the Battery Hotline called to check up on Lia. We are keeping an eye out for that battery. If we cannot find it then Lia will need a follow up X ray to be sure it is no longer in her stomach.