My Quiet Little Man

Zeke is probably the quietest child in my home.  He does not talk much and when he speaks, he normally speaks very quietly.  If you don't catch what he says the first time, he often will not repeat himself.  He is quiet, calm, and non-obtrusive and only gets upset if he gets into dairy, wheat or if we try to force him out of his routine or comfort zone.   As with most children that have autism, we had many years of hard times and therapy.  He was not always as calm and easy as he is now but has been now for many years.  When he does get into trouble, I have to gently discipline him or he will weep for literally hours.  Quietly and uncontrollably.  Non-consoleably.   A small lecture, in a low and quiet tone, is usually sufficient as a reprimand. 

This is the flacid look Zeke has all the time on his face whether he is having a good time or not.  Whether he is happy or not.  I have to ask him to look at me and smile to take a picture and end up with five pictures like this or with him smiling and looking another direction before having a great one where he is both making eye contact and with a smile.  Believe it or not, in the above picture he is happy and relaxed for him.  He fidgets and has facial ticks if he is bothered or upset inside.

The way autism effects Zeke, seems to make him VERY routine oriented.  For him to function daily, without melt downs and anxiety, we try to keep his portion of life as non-changing as possible.  I know it sounds like we cater to him and his whims but trust me, it just makes our life so much easier and his too.  Just a pretty calm, happy life for us all, with him, if we avoid the triggers that send him over the edge emotionally.  I could not imagine having seams of clothing bothering me so badly that I can not concentrate or soft lullaby music grating on nerves as badly as it does for him.  I do very few blog posts on him, as he does the same things, in the same order, pretty much day in and day out.  He gets up and does his day according to his chart we have hung on a wall for him.  He quietly does his school program in the morning/early after noon and then in his free time he disappears into his train/lego area and makes little to no noise.  He likes making videos of his toys and narrates them for us.  He likes spending time with his pets.  If we have to go somewhere he plays on his Kindle.  All of the other children in the home have outgrown him, as far as playing with him.  He still loves Bob the Builder, Blues Clues and playing with Thomas the Tank Engine wooden railway system.  All of the other children have matured to the point they don't actually play anymore.  BUT!  I have seen him starting to play with "B" our 2 year old foster son and they seem to like the same things and play on the same level, so hopefully they will continue in this area and have fun with each other.  With Zeke, things like this (relationships) are slow moving.

The other children all have things going on that I write about.  The girls do ballet.  Carolyn takes riding lessons.  William has several things he is involved with like archery, working on his VWbug or his stop animation.  By the way, William started a new Youtube channel.  It is still in the making and called Lego Bro 4 Studio, if you want to stop by and check out the newest videos he is creating and adding from time to time.  Antonio is usually my second quietest and least involved with activities.  He does not like to go outside much as the heat makes him vomit and cold makes his Cerebral Palsy extra tight and painful.  So we have to carefully plan out the trips or places we take him.

Recently, I realized that Zeke has been happily stuck in his quiet little world for quite some time.  Tim and I talked a lot about what we could do for him that would make a happy memory and make him feel special.  He usually only smiles if I ask him to, so it is hard to tell what makes him really happy.  Trust me, he loudly lets us know what does not make him happy!

What we decided to do was plan a special weekend with just him and his dad.  We saved and planned for two months.  It was a lot of fun and Zeke knew nothing of it.  We did not want to cause him any anxiety so kept it a secret, even from the other children.   We even packed his things the night before without him knowing.

Last Saturday morning Tim woke Zeke up and told him they were going to spend some special time together and they left. 

They went out for breakfast on their way out of town. 

I think this picture is from the next mornings breakfast...Tim took them all and sent them to me.

There destination was the Tennessee Railway.  Zeke loves trains. 

They spent the morning looking at and walking thru all the trains and railway cars. 

Then they went on a long train ride.

They even ate in the dinning car. 

Tim could tell Zeke was really enjoying himself as he was so calm and interested in looking at and touching every detail.  The train stopped at one place and they had a look around.

Praise God it was a good plan and they had a really great time. 

That evening they ate at one of Tim's and Williams favorite restaurants in the area,  Ribs and Loins.  They went bowling and then spent the night in a hotel.  

The next day I got all the barn work done and the whole rest of our crew around, stopped and picked up Stephen on the way and met Tim and Zeke at the Tennessee Aquarium. 

For those readers and family that say they would like to see me on the blog once in a while, here is proof I was there.  I carried baby "K" for the day.

A friend had donated some money toward us taking the children to the Aquarium for a visit.  Thank you "L.L."  We all had a wonderful time. 

We had not been in a long time. 

Probably about five or six years.  Long enough that Elizabeth does not remember ever going.

So it was a very nice time that everyone enjoyed so much.

It was also so nice to be all together with Stephen for the day as well.  A special treat.  Believe it or not it was cheaper for us to get the family membership than to pay for each individual person in our family for the day.  So now if we come up with the gas money at some point we can go again sometime.

Zeke my quiet little man seemed to have a wonderful weekend.  We love him so much and never want him to feel over looked.  He is a huge and special person in our life.  A wonderful son.

 

Psalm 95: 2-3  Let us come before him with thanksgiving and extol him with music and song.  For the LORD is the great God, the great King above all gods.

Blessings,
susan

The Sweet Release of Praise

Music has been a big part of my life since before I was born.  My mom is from a very musical family.  My mother was very musical.  She sang, played piano, autoharp, accordion, organ and the list goes on.  She sang to us while we were in her womb.  She sang solos in church and in nursing homes.  As soon as we could sing she had us going places and singing with her, my mom, my older sister and myself.  I have some very fond memories of those days.

My mother bought new church music books often and combed thru them for songs she thought we could perform somewhere.  When I was young my mom would call to me as she sat at the piano and would teach me new songs she had learned from them.   When I grew up and moved out I always visited frequently.   My visits often were partially spent at the piano singing with my mother.   The music would flow, the harmonizing so wonderful and we would end up just singing and praising God.

When I became a music director at a church she became my pianist.

When my family moved onto my mom and dads farm, she called often to have me walk down and sing with her.  It brought great enjoyment to us both. 

When we did jail ministry together, a large part of it was praise and worship.  When we went to the nursing homes we would sing old hymns.  When we did hospital Chaplaining together, we would sing acapella for some patients. 

I sang with my mother as a toddler, as a child, as a teen, as a young woman.  I sang with her and to her while she was sick and in the hospital.  I sang to her the day before she passed away.

My mom has been gone for 10 years next month and all these years I have not had much music around in our home.  

My moms piano is in my living room and no one plays it.

We used to listen to praise and worship music in the vehicles everywhere we went, oftentimes very loud.  I used to have music playing on the radio sometimes. 

All these years music has been painful to me.  We home church but if we got invited to visit a church to hear my nephews sing at their church as soon as the music started to play or it was time to sing hymns, tears would just start to flow. I could not stop it if I tried.   If I tried to sing the words they would get caught in my throat or I would cry uncontrollably.  The kind of cry that you heave and can’t catch your breath. 

I know I need praise music in my life and in my children’s lives.  I know that praise is a thing they need to see and experience.  We all need it and God deserves it. 

Yesterday was a hard bad day.  We had five appointments for the day, four of them were people showing up at our home for them, so the day should not have been bad.   The one we had to leave the property to go to, was one we had to be at first thing in the morning.   Baby “K” had a swallow study at our local hospital.  We all worked hard to get up and around for the day and I took Carolyn and Elizabeth with me to push the toddlers strollers.  The baby was not allowed to eat anything after 8 am.  We got their early for our 10:30 appointment.  The hospital could not find the orders…they could not get “K”s insurance number…one missing thing after another…on and on time ticked away.  Our little toddlers have come so far in their behavior but their limit to sit is about an hour and I am out of tricks to keep them happy.  Time ticked by.  It was 12:00 noon by the time the hospital had everything in order to let us back to have the study done.  The toddlers were so tired and starting to get hungry.  The baby was beyond hungry.  They moved us to a waiting room and I have never in my life been so happy for Sponge Bob Square Pants…yes you read me right.  The family that does not have piped in TV and won’t even let my kids watch it was so happy to have it playing in that waiting room.  The toddlers zoned out in front of substandard cartoons and the hospital staff came and took the baby back for her study.  We did not get out of there till 1:00 p.m..  I had a headache felt myself having some low blood sugar issues from missing lunch and was so frustrated.  It was not the children’s fault, they did brilliant considering the circumstances.  To be honest I felt like acting the way they did!  The rest of the day was just harder because the beginning started out so badly.  Needless to say I fell into bed last night to tired to even pray for everything I usually pray about. 

This morning was therapy day.  We had to get up early this morning and get a lot done fast to get all the children to therapy by 8:00.  Tim and I drove in separate vehicles because Tim was secretly going to take the older children to see the new Planes Movie after therapy at the theater.   We rarely go so it was a big deal.

They had a friend "J" go with them today as well!

Tim drove the big van and I drove Tim’s mini-van as I was going to use it to bring the baby and the youngest toddler home for the afternoon. 

As we left for therapy and I got into Tim’s vehicle, I started it up and as usual his praise music came on.  Usually I quick flip it off.  This time I could not turn it off.  The tears just flowed.  Song after familiar song singing praise to the God of heaven and earth and all that is there in.  The God of me and the children.  Our God.  I sang and sang.  It was such a sweet pent up release.  Not just because I had one really hard day but a release from almost a decade of running from the pain of hearing this music.  Sadly, praise music for our God.  It was such a washing, a cleaning I cannot explain.  It was a lesson and I don’t know why it took me so long to just go thru it and get past it all.

I feel better.  So much better.  I know I need to bring music back into our home and give the sacrifice of praise to our God…He deserves all our praise.  It is for us as much as it is for Him.

Psalm 92:1  It is a good thing to give thanks unto the Lord, and to sing praises unto thy name, O Most High:

Deuteronomy 10:21  He is thy praise, and he is thy God, that hath done for thee these great and terrible things, which thine eyes have seen.

Blessings,

susan 

If The Calendar Does Not Lie...

We had an amazingly busy week.  I knew it was coming.  It was on the calendar for quite some time.  I was dreading it.
 

It was the week of Williams Drivers Ed class.  He had to be there by 8:00 a.m. every day and picked up by 4:00 p.m..  Getting him there would be almost impossible but Tim could pick him up.  I would have to get up and get Antonio toileted, bathed, tube fed and dressed.   The milking done in the barn and barn chores done.  The toddlers up, fed and bathed. My other children gotten up and around and baby "K" up and bottle fed, which takes about an hour.  (She is a very slow nurser.)  I would have to do all that and probably more I forgot and out the door by 7:30 a.m. to get him there by 8:00 a.m..  I would have had to get all of us up by 5:00 or so to get it all done, us all working hard and fast together.    I am so very grateful to my dad for volunteering to take William for me.  Dad took him Monday, Tuesday and Thursday for me!  I did it Wednesday as I already had to be in town for some appointments and wow, it was ruff.  I would be sleeping now and not typing if I had had to do that routine every one of those days.  Thanks so much Dad!!

The one thing I was looking forward to about this week?   I was hoping it would give me a glimpse into what it was going to be like when and if William goes into a program to further his education or gets a job.  I needed to see and feel what it was like for him to not be here as he helps me so much every day.  Wow... Thank you God for William for all he does around here.  God helped me every day do everything but it was much harder without him here.  I want William to not be held back by me needing him here so this was a good test run.  It was also a great opportunity for him to see what schooling would be like.  He has been home schooled his whole life.  So, having to be to a class on time, being in a class where you sit in hard seats and have to crank out information and take notes was very good for him.  He came home very sick on Monday from the stress of it being the first day but did better every day he went.  So this was a good thing for us all to go thru this week.  On Wednesday, when I pulled up to the huge high school the class was held at and dropped him off with his lunch and back pack, I had the feeling like when you drop your kindergartener off the first day of school.  So funny!

I learned that God is with me always and will help us to get every day done.  I will need to make some changes around here to make things go smoothly without him here but God will help us with life and all it demands. 

William learned he can do this (school, job or anything life brings).  That even though he had to step way out of his comfort zone and it was very stressful, God helped him and he did great.  He kept up with typical young people, his age, in a main stream Drivers Ed class and not only passed but did well.  Thank you God!  Great job William!!  He has two days of driving with a driving instructor next week and then will get his Certificate of Completion.  Then he can take his test to get his drivers license.  Yippee!  Another milestone met!

We had many appointments this week as well.  The biggest one for William on Friday.

Actually the room kinda looked like this...

And this...

And this... His wheel chair only fit in the room one way with all of us in it so he had to look back to see us all.  Bless his heart.

The test results do show William has the beginning stages of Addisons.  That is not the greatest news but we have been praying for answers, so it is what it is.  The good news is, now he can get the treatment and medication he needs to help him feel well again.  Praise God we have an answer.

We had an appointment for baby "K". 

See how chubby she is getting!  I love it!  I hate blocking out the children's sweet faces.  Hopefully some day I wont have to do that anymore. 

I thought she had bronchitis but the doctors think she is aspirating on her formula.  So she has a swallow study next week.  She has very low tone and is very laid back and quiet.  They think her muscle tone is weak everywhere, including the muscles that keep the formula down and I already know she has a very weak suck as it takes her so long to nurse.  She fatigues very easily.  She also gulps air when she swallows. So after this study we should have a few answers with her.

We had an appointment for "T". 

The test came back that he does not have Celiac Disease but he seems to be gluten sensitive.  So he is now on a dairy free/gluten free diet.  Hopefully this will clear up his diarrhea issues.   He has always been on the crabby side since he came here.  We tease and say he is crabby but cute.  He just was always walking around fussing unless being held.  Not totally happy on his own all the time.  That has changed already since changing his diet.  I think these tummy issues were bigger than we all thought.  He is happy now and seems to be walking better and thinking more clearly.  So, I pray this helps him.  We have had Zeke on a casin free/gluten free diet for years but it still is not a fun way to eat.

So now if the calendar is correct...if the calendar does not lie... and we have no surprise appointments pop up, we will be back to our normal four or five appointments a week again and things will be slower and more predictable again for a few weeks.  Thank you God!

I pray your summer is going well and greatly blessed!

Psalm 150:1-6  Praise ye the Lord. Praise God in his sanctuary: praise him in the firmament of his power.

² Praise him for his mighty acts: praise him according to his excellent greatness.
³ Praise him with the sound of the trumpet: praise him with the psaltery and harp.
⁴ Praise him with the timbrel and dance: praise him with stringed instruments and organs.
⁵ Praise him upon the loud cymbals: praise him upon the high sounding cymbals.
⁶ Let every thing that hath breath praise the Lord. Praise ye the Lord.

Blessings,
susan 

Happy, Happy! Birthday Stephen!!!

Stephen made me a mother.  I was just a daughter, sister, granddaughter, niece???? before he was conceived.  I was a selfish child and only thought of myself much of the time before he came into the world.  When I knew he was growing inside me it rocked my world.  I ate better.  I took better care of myself.  I took vitamins.  I used the money I earned to buy things for him instead of myself.  I had always wanted to be a mother and it was happening!

When he made his grand appearance, on July 15th, I was just in awe.  The experience and pain of labor melted away from my mind as they laid him by me.  I could not take my eyes off of him.  He was beautiful.  A crying little thing with a head full of black hair, who quickly calmed down as he heard the sound of my voice.  I was just in awe.  Total awe.  I am still to this day.  The miracle of life and children.  How they progress, grow and learn.  How they become who they are but yet were from the time they were born.  Amazing!  Gods creation is just amazing!

As I have matured and grown thru the years I learned that the bible is totally true.  Children are a gift from the Lord.  They are His but lent to us to raise, nurture, love and enjoy.  Every time The Lord gives Tim and I a child, I have that same feeling I felt so many years ago.  That amazing feeling that I am a mother and what a huge responsibility that is.  The total excitement and joy of that honor being placed in my life.

Stephen was a high energy child from the start.  He was strong and active, demanding and so smart.  It was exhausting at times to keep up with him as he grew and I was very young and supposedly had a lot of energy myself.  As he grew he asked questions non-stop.  We kind of grew up together in a lot of ways.  I made a lot of mistakes on him as my first child.  I got the parenting skills that have served me well all these years from having to be creative as a parent with him!  He was a handful and I learned so much in raising him. 

Yes, he invented his own siblings to play with and do things with!

He had me all to himself for 9 years. 

As he became a young boy we fished and took trips.  We played games and enjoyed each other for company.  As he became a teen we had deep talks and listened to loud music together.  We became friends as well as mother and son. 

He helped me so much around the house and farm as Tim and I started taking in children thru foster care.  It was a family thing.

We always shared with Stephen a placement and got his thoughts on it before taking the child or children.  As it always effected him as well.  As I had more and more on my plate often he did too. 

Even though we don't always agree on things and have had our share of heated discussions.  I know he loves me dearly.  He is a fine son.  We all love him dearly. 

Happy Birthday my Stephen!  My very first child.  You are the one that God chose to use to make me a mother and we became a family.  I love you dearly and always! 

Psalm 127:3-5  Lo, children are an heritage of the Lord: and the fruit of the womb is his reward.  As arrows are in the hand of a mighty man; so are children of the youth.  Happy is the man that hath his quiver full of them: they shall not be ashamed, but they shall speak with the enemies in the gate.

Some Challenging Days

All of a sudden we have quite a few appointments and places to be daily again.  Life has been so busy that I fall into bed just exhausted every night.  I fall asleep as soon as my head hits the pillow, only waking to little miss "K"'s squeaky noises, as she stretches and wakes up for her night feeding.  We have a precious hour together every night, just the two of us while she slowly eats, gets burped and falls asleep into dreamy smiles in my arms.  We both go back to bed and sleep for the last few hours of the night.  Things are busy and sometimes very hard but with lots of wonderful things mixed in every day.  God is so good.

When I have to go somewhere now, we have to pack diaper bags and toy bags to keep the toddlers busy as they do not sit still well anywhere yet.  We have to get all the children ready.  If we are going to be gone over a meal time I have to pack me food because of my food sensitivities.  We have to load Antonio in his wheel chair and climb into the van and over seats to buckle three babies in their car seats.  Then every stop we make we have to unload Antonio, set up many strollers and unload three babies from car seats.  If we make just a few stops I am so tired just from the loading and unloading process.  Praise God for all the other children that help me so much in this whole process.  All I can say is that every week I look forward to Sabbath so we can all have a down day and just truly rest at home.  Thank you Lord for a commanded day of rest! 

Some of these appointments have been for William.  I think we are getting closer to figuring out exactly what is going on with Williams health, Praise the Lord.  His health has been declining for the last four years.  He has all the same symptoms as his dad does with Addisons Disease but the test keep coming back that he does not have it.  One test did show that he has a chronic problem with hypoglycemia that we are trying to control with diet but without success.  (Tim had this issue as well before being diagnosed but it got much better on its own once he started his Addison's med.)  I decided to take William to a pharmacy, in another town, that has a pharmacist there that works with people and their diet to control diabetes and other health issues.  They focus on natural if possible for health.  After a long health interview and filling out a lot of questionnaires about his health, the pharmacist said he felt it was his adrenal system as well.  He suggested a 24 hour cortisol test to be done.  It would show what his cortisol levels are at different times through out the day.  We got the results back yesterday and it did indeed show Adrenal fatigue and insufficiency.  I now have an appointment with his pediatrician to discuss the test results.  We also have an appointment with Williams Endocrinologist that has been trying to help us figure this all out for several years.  I pray we can get to the bottom of this and improve Williams quality of life.  As of right now he has so many "crashes" during the day that he has a hard time thinking, his co-ordination is sometimes off and he is exhausted.   The only way for him to feel better is to lay down or sit quietly for a while to get through the day.  Going out into the heat, not eating frequently enough or enough protein, and physical work, all make him "crash".  Before he can move forward in this very exciting time in his life, of spreading his wings a bit, we have to get all these things addressed and figured out for him.  As of now he can not hold a job or further his education until we get to the bottom of it all and find treatment.  I am very excited and feel we are on the brink of being lead to the core issue and treatment for him.  Thank you God.

(Now for some potty talk, sorry.)  A lot of the running to appointments has also been for "T".  He has had diarrhea since he came here way back in February.  When both the boys came they both had it.  I attributed it to the fact that they had an almost total milk diet and that they both had been on heavy IV antibiotics for staff infections when they came.  I have been giving them both probiotics for a long time and have seen little to no improvement in "T".  "B" did get back to normal but about once a week or so gets diarrhea for several days as well.  Not fun for potty training!  Six weeks ago "T" got his age appropriate shots and his bowels have been almost water every since.  We have had to take him in for blood work and do the whole potty sample routine.  He has been tested for a lot of things and one test showed that he does not digest Fructose at all.  So he can no longer have dairy and maybe some fruits.  I see a difference in his appearance and energy level since taking him off dairy.  No more dark circles under his eyes or red rimmed eyes.  Also, he is not waking in the night anymore and fussing for a few moments at a time.  I guess it was stomach aches from dairy.  But it has not cleared up the diarrhea for him.  The HIV test came back negative, glory to God.  We are still waiting on the Celiac Disease test to come back.  If that test is positive he will need to have a Dairy free/gluten free diet.  Not an easy diet to have a toddler on.  We are praying for answers for this little guy as well.  If "T" comes back positive for Celiac we will have "B" tested as well and that might explain his intermittent bowel troubles.

Lastly, we have had several appointments for baby "K".  Over all she is doing very well.  She is growing and at her last appointment was 10 pounds 11 ounces.  When she came she was 7 pounds 3 ounces.  She no longer fits new born clothing and had to move up into the next size diaper.  She is getting stronger and her eyes are focusing much better.  When she came her eyes stayed to the outside almost all the time.  Her eyes basically looked to the outer sides of each eye.  So I don't know if it is just a weak muscle thing or not.  We might end up going to a specialist about it at some point.  But as time is progressing she is bringing them into a normal position more and more.  We are praying about her reflux too.  It takes about an hour to feed her.  She is a very slow drinker and I have to burp her after every ounce or it all comes up.  Even though we take our time and burp thoughally we still end up with it all back up and all over us at least one feeding every day or so.  It scares me every time.  As babies are nose breathers and she spits up with such force it comes out her nose and blocks her airway.  She can not breath and catch her breath.  I have to suction fast.  I am praying she will outgrow this very soon.   Every time this happens I have to take a shower and bathe her.  Then after her tummy settles, re-feed her.  All that aside...she is a very very good baby.  She is happy and smiley.  She is laid back, content and good natured.  I enjoy every moment with her.  Such a sweet little girl.  She brings us all a lot of joy.

May the Lord God in heaven clearly lead us all in the direction He wants us to take in our lives.  May He help us all to have a servants heart in all we do.  Being Christs hands and feet here on earth till His soon return.

Isaiah 41:10  Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.

 

Blessings,

susan

Happy 18th Birthday William!!!

Wow!!!  How in the world did William get to be 18 already!  Truly, this birthday of his is hard to wrap my mind around.  I mean it doesn't seem like it but 18 years ago I was in labor hoping he would be born on the 4th and he showed up on the 5th!  Life really does go by so fast.

All of my children are gifts from God.  Each very special in their own way.  William, was given to me by God, when He knew I needed a break from raising children with difficult challenges.  I have only ever had to discipline William a few times in his whole life.  We have had many hard struggles with his sensory issues and learning disabilities (Autism) but even through tears, he would and does always try his very best to do what we ask and tries to please us.

He reminds me so much of his dad, Tim.  They are so much alike in their actions, ways, helpfulness, patience and heart.   After Stephen grew up and moved away, William did his very best to step in and fill Stephens shoes in all he did around our home and farm.  William has done a wonderful job and is my right hand man.
 

He has lost some weight since being on his new diabetic diet for his hypoglycemia.

He looked forward to splurging off his food restrictions on this happy day and eating cake!  Once again Aunt "S" outdoes herself and comes forward with a request in her cake decorating skills.  He wanted a Mega Man cake!  Thank you Aunt "S" for always making the children's birthday special with a cake made with love by you!

William is on the brink of a very exciting time in his life.  So many opportunities and changes.  We just have to pray that God will show us what His will is for William.  He will be taking drivers ed this month and getting his drivers license.  He will be purchasing Stephens little truck as Stephen is getting a new vehicle.  Also when public school starts back in the fall, William will be tested to see what is available for him as far as furthering his education. 

He has grown into such a fine young man.  He is a wonderful servant of God, son, brother and friend.
We love you so much William.  Happy Birthday!!!!

Psalm 112:1-3  Praise ye the Lord. Blessed is the man that feareth the Lord, that delighteth greatly in his commandments.  His seed shall be mighty upon earth: the generation of the upright shall be blessed.  Wealth and riches shall be in his house: and his righteousness endureth for ever.