Friday, November 11, 2011

All Worth It

Veteran's Day, 2011.  We woke up early this morning because this is a day that Donavon has been looking forward to for a few weeks now.  His clothes are hung up from the night before and the house is still and quiet.  The alarm goes off and so does Donavon!  Off to the races.  Into the shower, and on to the rest of his routine.  Yet today is different from his daily routine.  Today is Veteran's Day.  He stands there in his tighty-whiteys, waiting for me to help him assemble the uniform that makes him smile from ear to ear with pride, his Royal Ranger uniform. 
We start with the basics.  The white T-shirt with the logo.  Then he slips on his pants and belt.  He pauses to ask me to make sure it is straight and tucked in properly.  "Rangers are clean!" he says.  Once that is assembled, he slips on his socks and shoes.  They have been wiped clean so that there are no scuffs!  He puts on his beloved bolo tie!  It's more valuable to him than a solid gold chain because he worked so hard to earn it!  He slips on his vest, stopping to let me help him straighten it.  I keep his Khaki shirt and beret for safe keeping, until the ceremony!

He is completely assembled and goes downstairs to get his breakfast and his medicine.  As I'm getting things put together, he quietly tells me (while bouncing a bit on his toes), "I want to do good at the ceremony so make sure I have all my medicine."  I smiled with pride and said, "Donavon, you will do great!  I am so proud of you!"  After eating his breakfast, we prayed and hugged as he went out the door with Daddy, to drive to school.

We all arrived together about ten minutes before the ceremony, just as Donavon was coming down the hall.  We gathered around him, Commander Ed, Daddy, and myself, and helped him get his khaki shirt on over his t-shirt, his bolo tie back on, his vest back on, and his beret centered and poised!  Time enough to take a picture and head into the gym!  I had a slight tear in my eye as he walked a little taller, with a big smile on his face!

The service was great.  He sat so well and even told us what he remembered from the service that we all had just observed!  The compliments, after the ceremony, came from his principal, choir director, and teacher with each one causing his smile to grow even bigger. 

For those who do not understand how a small Veteran's Day ceremony, at a small elementary school could do so much.  Let me tell you.  For Donavon, it takes longer to earn the patches the other boys are working on.  It takes more concentration and effort, on Donavon's part, to sit still.  It takes a huge amount of thought to make sure he does not soil his uniform, scuff his shoes or look disheveled in his clothes.  Donavon has worked twice as hard as an average child to earn every piece of clothing, every patch on his vest, and the pride that it brings.  But, Donavon has persevered.  He is proud to honor the veterans in this way.  It is his way of showing that, their fight for his freedom was not in vain!  It is his way of showing that he too can fight for what he believes in and see it through to the end, no matter how long it takes.  And that is what this great day was all about and made all the other days of incalculable stress, work, and struggles worth it!  The pride of a fight well fought!

To the veterans who fought for this freedom, we are eternally grateful and pray for you constantly! 

Monday, November 7, 2011

Another Day, Another Doctor



Another day, another Doctor it seems.  Donavon and I met his new doctor, Dr. Peter, a Neuropsychiatrist... Neurology and Psychiatry!!!  I was a bit apprehensive about seeing yet another doctor.  However, I got more answers today about Donavon and everything we have endured thus far, than I have in the 9 years of being his mother!

There are still a lot of questions to ask and find answers to, but God is faithful!  We are trusting Him to see us through. 

The goal through Dr. Peter is to not only regulate Donavon's medication and, hopefully scale back a bit to see less side effects, but also to see where Donavon's mental strengths and weaknesses lie!  It is exciting to finally have a game plan and a direction!

To all my prayer partners and intercessors, this is how we are praying...
  1. That God would guide and direct Donavon's doctors to clear and consice answers.
  2. That we would learn how to effectively interact, teach, lead, and love Donavon so that he grows and learns what he needs to be successful in life!
  3. That God would continue to cover and protect Donavon and heal him from HEAD TO TOE!
Thank you all for love and support as we continue this long journey!
 

Friday, November 4, 2011

10 Things the Parents of ADHD Children Wish You Knew

I was reading a blog, 'Beauty For Ashes', a while back.  The author, Shay, wrote an entry entitled "13 Things My ADHD Child Wishes You Knew".  She was inspired by someone else who wrote and educational piece, "10 Things My Autistic Child Wishes You Knew".  SO, the inspiration continues with me.  I have decided not to rewrite the piece but to put my own educational spin on it for all those who will be in contact with me and my family.  Here it goes.
*Keep in mind that these do not necessarily apply to everyone with children affected by ADHD.  Also, I am always open to talk about my son.  I do not get offended by questions when motives are well-meaning!*





10 Things the Parents of ADHD Children Wish You Knew
(the countdown)
10)  We have plenty of "advice" to work on and implement from professionals.  We do not need more advice from non-professionals.  We DO need support in the form of understanding, love, and prayer (and an occasional babysitter)!


9)    Be patient with me if I have to stop mid conversation to tend to my son.  I am listening to you and you are important.  I do want to hear what you have to say. 


8)    Do not try to talk to my child while I am explaining something, correcting, disciplining, or soothing him.  All you are doing is causing confusion, excess distraction, and another layer for his brain to decipher.  It causes more harm than help.  If you want to be supportive, simply reinforce what I have already said to reassure him. A smile is a great way to do that.


7)    My son’s disability was NOT caused by anything me or my husband did or did not do; It was not caused by anything we did or did not feed my son;  It was not caused by too much TV, video games, or neglect to allow him to play outside.  None of these things can improve or change my son.  They are all things we regulate in order for my son to have a well rounded, and productive life, however, they are not related to ADHD and it’s symptoms. 


6)    We (my husband and I) chose to medicate our son in order to give him the most advantages in life as possible.  This was not a decision we came to quickly or rashly.  It was a decision made after a lot of prayer, research, discussions with our pediatrician, and observation of our son in multiple social environments.  We are not and never will “settle” for the “easy way out” or compromise our son’s well being for the sake of convenience. 
*Natural remedies are not cure-alls either, so please do not tell me the benefits of gluten-free, sugar-free, or another "free" diet that will cure my son.  We research everything that we choose to use and weigh the risks and benefits with our pediatrician and other professionals.*


5)    Please do not compare my son to other children.  He is unique and special.  We do not compare him to other children because we do not want him to be ‘just like everyone else’.  We love him for who he is and we want you to get to know him and accept him because we know he is pretty awesome!


4)    I am human!  I get overwhelmed, frustrated, impatient, angry, tired, and emotional.  Sometimes, it all comes out at once, in various forms, at various people.  Please, don’t take it personal. *I NEED PRAYER too so don't give up on me!


3)    We are doing our very best to stay organized by using schedules, routines, and organization tools.  Some days are better than others but some days are simply chaotic.  If you decide to stop by on any given day, my house may or may not be immaculate.  Try to give us some notice so that we may welcome you into a straightened house!

2)    We are ALWAYS looking for babysitters!!!  :)

1)    All of the decisions that have been made were made with love, care, compassion, a lot of thought and prayer, keeping our son's and our family's best interests in mind and striving to do what is right.  THERE ARE NO SIMPLE SOLUTIONS!





Tuesday, October 18, 2011

Miracles Never Cease - Pt 4/4

Donavon LOVED all the cards that were sent through the facebook event "Get Well Soon, Donavon"  He had just under 80 (definitely a record). Thank you to all who sent cards and well wishes!

Tuesday morning, August 16th, Donavon was finally asleep after a long, difficult, and amazing night.  The residents came in just two hours later to check on Donavon.  I couldn’t believe how many students came with him!  There were at least 8 if not 10 students with the resident!  They all filed into our room as Donavon slept and I sat in the chair, groggy but trying to pay attention and ask my questions. 
They wanted to wait to see how Donavon would react to sitting up today to give him solids but they would give him liquid and soft food to start.  That meant popsicles, sherbet, juice, sprite, etc.  I think in two days, Donavon went through a 12 pack of sprite!  Donavon got up shortly after and wanted McDonalds.  (He knew about the McDonalds on the 1st floor.)  He also wanted me to go to the gift shop and get his Curious George beanie baby.  I took the opportunity to go get breakfast and grab his beanie baby.  They did give him all of his medication so his mood was starting to even out and he wasn’t so fidgety. 


Donavon's first outing, Tuesday (still with tubes and wheel chair)
The hardest part of the day was getting him to stay in the bed.  Especially once they gave him the ok to get into a wheel Chair and go to the play room.  That didn’t last too long, though because he got tired and in pain quickly.  His body didn’t want to stay but his mind did.  J  He learned how to use the trigger for pain real quick.
By the end of the day he had gotten up twice!  At that point, they let him have a full meal!  He ordered a huge dinner!!!  We had a much better night which started with prayer and then more praise and worship music.  He slept great!  I was in prayer off and on, praying over Donavon, our family, and many other things including just being still and quiet.
Wednesday morning, our Residents come filing in, bright and early.  The young doctor looks at me and says, “Okay, let’s get him out of these tubes and see about getting you home today!”  “Really?  This soon?”  I was shocked.  We were prepared to stay until Thursday but so ready to go home!  Donavon was doing so well, walking and eating that they were ready to send him home!  From then on, it was a waiting game, trying to get out as early as possible so that we didn’t have to drive at night.  They wanted to see a few other things happen after they took out all the tubes. 


Donavon, with the AWESOME group from the Navy!
So, Donavon passed the time by painting, playing Wii, watching videos, visiting with the Navy visitors (COOL visit, by the way), and playing the games on the in-house TV channel for the kids.  He won twice and got a new pillow pet from the activities director! 

By 5:30pm we were headed home!  God was so good!  Most kids stay the full three days.  Donavon was ready to go after 1.5 days!!! 
He came home and was treated like royalty for 4 weeks!  He LOVED all the attention and especially loved having Daddy off for the rest of the week!  It was such a great time of healing and rest for our family. 
Donavon had his stints removed on September 14th and is back to normal, running, playing, going to school and Royal Rangers (Christian scouts)!  Every time I look at him I see God’s hand on him!  He is a miracle!



Donavon painting (his favorite art activity) in the play room.



Saturday, October 15, 2011

Miracles Never Cease - pt 3

Photo:  Donavon at Riley Children's Hospital (with his pillow and blankets), Tuesday, August 16th at about 8am.  He was so tired from the rough night before.

We got into our room and went through a bunch of questions once again (being admitted, they go through a lot of the same questions as when we checked into Surgery).  Our nurse was awesome, by the way.  You’ll see why but we absolutely loved her!!!
Donavon was beginning to feel the pain meds ware off.  Remember, he was off all of his medication so not only was the ‘epidural’ wearing off, he was also feeling the effects of not having his meds all day.  He was scared, anxious, in pain and nothing was soothing him.  I went between the nurse and Donavon for about three hours.  We prayed, I stroked his forehead and held his hand.  He would calm down but as soon as I started to back off, it would start all over again.  The tears, the writhing, the crying, the restlessness and indescribable agony continued.  They gave him a few different medications that didn’t seem to do anything but make him more agitated.  As I was praying again, I heard in my spirit “praise and worship music”.  I knew God was dropping wisdom into my spirit.  Donavon’s favorite praise and worship leader is Jason Upton. 
(*side note* - If you have a chance, look him up on Youtube and listen to him.  He is anointed!)
The nurse was on the phone, with the on-call resident for Dr. Cain, discussing options to help Donavon.  He ordered a “pain cocktail” which is a combination of medications to help kill pain, help him calm down, and help him sleep.  As she was on the phone, I was setting up my laptop on Donavon’s hospital table and put it next to the head of his bed so he could hear it.  As the first song began to play (Psalms 23), I anointed Donavon with oil and began praying and praising God quietly.  Donavon began to calm down.  He was lying quietly and began to fall asleep.  I stopped stroking his hair and sat back in the chair, praying.  He was still calm.  I could feel the sweet presence of the Holy Spirit falling in the room.  It permeated ever corner with peace!  The nurse walked in shortly after Psalm 23 ended and went on to the next song.  The first words out of her mouth were, “Wow… It is so peaceful in here.”  She told me what the doctor ordered and that it we had to wait up to 20 minutes for the pharmacy to fill the order and send it up.  I told her that was fine.  She came back a few minutes later with another nurse and said, “See what I mean.  It’s so peaceful in here.”  One other nurse poked her head in and whispered, “Wow.”  (They could all hear Donavon screaming and crying just 20 minutes ago!)  This nurse asked me if I needed anything and I said “no”. 
About 25 minutes passed by and our nurse came in with the medication.  She asked me if I still wanted to give Donavon the meds.  I said “Yes.  That would be good to help him stay asleep for a while.”  At that point I was going on 24 hours (up at 5am the last morning and it was now about 4:15am!) 
The music was still playing as I laid down on my bed and fell asleep for a couple hours.  As I began to fall asleep, with the music still playing and the peace that passes all the nurses understanding hovering in the room, I couldn’t help but be amazed at God.  How great and awesome, mighty and loving, caring and more than any describing word could ever express is our God.  He who calms the storm and holds our peace in His hand loves us so much!  I worship Him because He is my God! 

Photo Caption:
Excerpt from the song, Sometimes He Calms the Storm by
Scott Krippayne.
(*Click on his name to hear the song on Youtube*)

Wednesday, October 12, 2011

Miracles Never Cease - pt 2

Donavon was a great navigator.  He loves maps now that he knows how to look at one!  He pointed out roads and landmarks.  He also pointed out all of the White Castles along the way.  (We don’t have one in Fort Wayne and on his very first trip to Riley, we stopped at one on the way home.  Joe and all three kids had their very first White Castle’s experience!!!  They loved it!!!)
When we got to Riley Children's Hospital, we were a bit early so we decided to take our time and walk around a bit.  We found the gift shop and we also found McDonalds right next to the Cafeteria.  Very cool!  Downstairs, in the lobby, there is a huge water fountain which, if you sit around it long enough, makes you have to pee.  J  Finally, we took the glass elevator up to the Main Stay Surgery department and checked in.  Apparently, we were the last ones for the evening.  They asked all the questions and had Donavon weighed and put into a gown.  Then we waited… and waited… and waited.  With Donavon’s anxiety, we talked about the surgery off and on and when he became too emotional, we would pray, me and then Donavon. 
They brought in some water for Donavon because they didn’t want him to get dehydrated, and then informed us that Dr. Cain was running behind.  At that point we were shooting for 7pm.  We weren’t upset by the change of plans.  By all means, we understood that there were complications or delays in the surgery prior to Donavon’s and that pushed back schedules. 
(Side Note:  TV doctors are NOT real.  Doctors going from patient to patient with no breaks are totally phony.  After being in surgery, they have to take a break.  They have little lives in their hands and I wanted our doctor well rested before he began working with my son!)
The tough part about waiting so long was that Donavon had not taken his afternoon meds so he was beginning to ‘rebound’.  For those who are not familiar with this term, it is the act of bouncing back from his medicated state.  When Donavon rebounds, he gets emotional, moody, anxious, and clingy among other things.  The staff in the surgical unit was great.  He ended up with about half the treasure chest… A new beanie bear, two painting windows, two coloring books, crayons, a car, and a bunch of stickers!  We also were told that all the TVs had DVD players so we brought 4 movies from home.  Thus began the 3 days of Super Hero Squad, the TV series.  In between distractions, we prayed and cuddled.
7:15pm and here comes the nurse with some medicine and a rolling bed!  The meds were to calm his nerves!  AMEN!  After about fifteen minutes, Donavon was on cloud nine.  Giggling, smiling and talking, a lot of talking.  He was still nervous and we prayed.
At about 10 till 8, the OR nurse came in with the anesthesiologist and they told us they were ready for Donavon.    We prayed and Donavon gave me a hug and a kiss.  Then they wheeled my baby away.  It had been a long day and now it was finally here.  He was now in God’s hands, and the surgeon’s. 
I sat for a second after they wheeled him off.  The nurse came in and startled me out of my daze.  She told me I needed to get my stuff and go eat and then head to the waiting room for the OR nurse to call me.  I had small suitcase with both of our clothes, my purse, his book bag, and a train case with toiletries.  That was a lot for just me to carry, and was awkward to lug around Riley at 8 o’clock at night.  I headed for a burger and a coke since I didn’t eat lunch out of respect for Donavon and his fasting.  I got the food to go and headed for the waiting area on the second floor.  It was above the waterfall.  The first thing I did was eat.  In between bites, I set up my computer so that I could inform Joe of Donavon’s progress.  I had been in touch with him off and on with the computer but reception was not great in the waiting area of Surgery.  Now I had a good reception.  I loved video chatting with him over the week.  It helped us feel close and helped Donavon with anxiety! 
At 9:30 I finally got the first call from the OR nurse.  She apologized for taking so long since they try to call every hour.  She first told me that Donavon was a trooper and wanted to hold her hand.  Before they put him to sleep, he looked up at her and asked her if she would pray with him because he was a little nervous.  When she said that, I quietly shed tears of pride and joy for my little man.  All on his own, he trusted God and thanked him for the nurses and doctors.  She said, when they put the mask over his face, he giggled and went to sleep.  At that point, they began the work of inserting IVs and giving Donavon a similar procedure as an Epidural, called a ‘coddle’ so that he would not feel anything.  All went smoothly and Dr. Cain was now working on Donavon.  I have to admit that I was floored by the way God kept him calm and that he was a witness, even on the OR table.
Off and on I chatted with Joe and my mother to pass the time.  I played on the internet and went down to get some coffee from McDonald’s.  I prayed and did everything I could think of to stay awake.  I got the second call at almost 11pm.  She apologized once again for calling late.  The report was as follows:
Dr. Cain had scoped out Donavon’s bladder and kidneys.  There were some complications.  (My heart sank.  The surgery was only supposed to be 2 hours total.  We were going on 4 hours.)  Donavon was okay but they had to change some plans and do some things differently.  At ll o’clock they were trying to finish up and Donavon would be in recovery as soon as they start to close up.  Dr. Cain would come out and talk to me in detail about what took place.
I held back tired emotion and prayed, thanking God for keeping his hand on Donavon and the surgical team.  Then there was more waiting.  About 11:30pm, Dr. Cain came out of the elevator and walked over to where I was sitting.  He shook my hand and sat down in front of me.
Donavon is doing fine and they should be calling me back to recovery area real soon.  He started the procedure with a scope of his kidneys and bladder to see exactly what they were working with.  The wall of a bladder is supposed to be smooth and slippery like the inside of your mouth.  Donavon’s was inflamed and scarred and looked like basket weave.  Because of that, he had to reinsert his ureters (tubes that carry urine from the kidneys to the bladder) behind the bladder where the bladder wall was not as scarred.  This took longer.  He inserted two stints as well and tightened the opening of the bladder.  He removed the fluid pouches and last but not least, opened up the entry of his penis so that he could urinate more smoothly. 
As soon as I shook Dr. Cain’s hand, I called Joe and relayed the message to him and then to my parents.  They did not finish with Donavon until after midnight (the resident closing him up and the anesthesiologist beginning to wake him up plus whatever else they have to do to finish up) and called me back into the recovery room.  Donavon was the only child in a large room that looked like an ER with beds and cribs and equipment set up at stations lining all four walls and a big nurse’s station in the middle.  The lights were mostly out except the entrance lights and the lights above the nurse’s station.  Donavon was groggy and not moving much but definitely awake and (as the nurse informed me) started talking to her as soon as he woke up. 
About 15 minutes later, they checked his stats for the last time and packed up his IV and monitors to take him to his room.  I was grateful to be able to get into the room that we would be in for the rest of our stay.  Off we went to the 9th floor!

Miracles Never Cease - pt 1

Summer seems like a whirl, now that it’s over.  Donavon's Birthday was July 2nd.  On a completely different tangent, he had prayed for a long time for a new bike.  That was all he wanted for his birthday!  We could not afford more than a few coloring books or hotwheel cars so we were also praying that God would provide a bike.  God heard our prayers and so did some amazing people.  They went to Walmart.com and ordered a bike to be sent to the stor my husband, Joe, works at! 
However, July was also the start of some difficulty.  We had an issue getting to Indianapolis.  With a family of five, money is not something we have readily available.  After much prayer, God came through with enough to make it to our pre-surgery check-up.  This was a miracle unto itself because we thought we would have to cancel our trip due to lack of finances.   
The 30 day check-up was to make sure that Donavon had not gotten worse.  At this check-up, everything looked relatively good.  He had been utilizing the techniques that they taught him to urinate which were helping to stabilize his bladder and kidney function. 
They gave me a couple papers with listed phone numbers and the date of our surgery.  It also had instructions of what was going to happen.  Donavon’s surgery was scheduled for Monday, August 15th.  However, it is their procedure to schedule the youngest child first.  Since they didn’t know who was youngest until the week before his surgery, we would not be informed of his surgery time until Friday before his surgery.  For me, as a ‘planner’ this was difficult to sit and wait to find out how to plan our trip.  Aside from the fact that my son was going to have major surgery, I didn’t know how I was going to pay for the expense of driving down, paying for food and possibly lodging, and parking.  On top of that, I was concerned about what was going to happen at home with my husband and 4 year old twins.
The week before surgery came and we were still stressing about the money.  However, God was working some things out in the background.  The church I practically grew up in, where my parents still attend was involved.  One of the financial directors was in touch with my mother and had called me and talked to me about the situation.  On Thursday, he called to tell me that there was an envelope for me which enclosed $50 in gas vouchers and $100 in Visa gift cards which could be used anywhere.  This would cover my drive there and my food for the week! 
Now that God had covered the trip to Riley, it was coming down to the scheduling of the surgery.  They called around 11am Friday.  Donavon was originally scheduled early.  After talking to his nurse, they were willing to push his time back to later in the day!  Donavon was scheduled at 5pm and we would have to be there about 3:45pm to check in.  This was exactly what we had prayed for because I did not want to have to drive at 5am to get to Riley Children’s Hospital by 7am. 
The day of surgery was here.  We were all anxious, even though we tried to stay calm.  Joe had the whole week off to take care of the twins while I was gone, and to help me when I got back.  That morning, we had a small breakfast, since Donavon couldn’t eat anything, and sat together on the sofa, cuddling and being close.  It was a nice time.  I didn’t want it to end.  We gave our hugs and said our goodbyes.  The van was loaded the night before so all we had to do was load up the last few things and get going.  It was hard to say good bye with so many insecurities, but trusting God to see us through, we went.

 
Photo 1 (top): Donavon, riding his new bike for the first time! It was hard to get him to sit still long enough to take pictures.
Photo 2 (middle):
My Husband, Joe giving hugs to Donavon before we left for Riley Children's Hospital, August 15th, 2011. Maya, squeezing in to be included in the hug!
Photo 3 (right):
Nathan, Donavon, and Maya. The twins love their brother and didn't want to say "good-bye". (Nathan and Maya turned 4 on July 17th. Donavon turned 9 on July 2nd.)

Friday, October 7, 2011

The Summer of Blessings

 
Just before the end of the 2010/2011 school year, not long before our conference to get him tested for learning disabilities, Donavon went through a few tests to look at his kidneys, bladder and urological functioning.  For those familiar with the testing, he had a VCUG and some ultrasounds.  Since Donavon was still having difficulty with UTIs (Urinary Tract Infections), Donavon’s pediatrician felt it was necessary to look deeper into the problem.  We are very grateful that he did.
He sent us to Riley Children’s Hospital (THE BEST children’s hospital in the world…BARR NONE!) to see a pediatric urologist there and be further tested.  Since we live about 2 hours away from Riley, we began to schedule the trips to Indianapolis, Indiana and make them all day events.  For the kids, it meant getting undivided attention for 2 hours up and 2 hours back.  Games, music, snacks and no distractions!  LoL… ROAD TRIP!!!
What they found on our first 7 hour visit, was that Donavon’s bladder was so full that there were fluid filled sacs on his bladder (kind of like overflow pouches) and that urine was traveling back up the ureters (tubes) into the kidneys.  This was causing infections and damage to the bladder, ureters, and kidneys.  He also had ballooning of his urethra and the opening of his penis was small.  What this all boils down to is Donavon would have to have surgery to correct this issue.  If it went uncorrected, Donavon may have had eventual kidney failure. 
So, in the midst of dealing with the school, we now had a very serious physical condition to bring our attentions to.  The last of the school year was difficult.  We had to “potty train” Donavon to sit a little bit longer and make sure his bladder was completely empty.  We had to make sure that he was going to the bathroom religiously, every two hours.  Plus, we had to make sure that his kidneys were being flushed out frequently.  So we made him drink 6 – 8 oz cups of water, every time he went to the restroom. 
In July, we began to gear up for more trips to Indy.  In the midst of it all, we were able to get Donavon tested, by the school district, to determine eligibility for an IEP or an Individualized Educational Plan/Program.  (I’ve heard it both ways.)  He did great and qualified for exactly what we knew he would.  He is not mentally retarded.  He is simply having difficulty grasping abstract concepts and new material.  At this point, they wanted to schedule his case conference for the week we were in Indianapolis for his surgery.  We politely told them that the date they chose would not be possible and put them on hold until after his surgery. 
**On a personal note, I felt like I was spinning at times.  The financial strain, having the twins with me at all times, and trying to juggle everything, was sometimes overwhelming (understatement of the year).  The ONLY thing that got me through this summer was God’s grace and mercy.  There were times that I seriously thought I was going insane!  I thought I would snap and lose it.  God always had someone there to support me, even if it was a simple encouragement message on Facebook.  Aside from what I have been writing about, there were personal issues, a church split, family issues, and financial issues lingering in the background that not many people were privy to.  BUT through it all, God has kept us, preserved us, and purified us.  We trust Him and know that, even though we’re still not finished, we will come out of it all as pure gold!  (Zechariah 13:9, NKJV)
August was finally upon us.  Registration for school and surgery scheduled for the week before school started.  The hardest part of enduring the summer was, knowing for two and a half months that this surgery was coming and having to just wait for it. 
TO BE CONTINUED…
(Next entry, THE MICACLES!!!)

Thursday, October 6, 2011

Another Fresh Start

Donavon started 1st Grade with an awesome teacher.  (Since I don’t have permission to use her name, I will refer to her as Mrs. F.)  His medications were well balanced and we were beginning to see some normalcy to his behavior. 
This is where we started to see issues with his learning ability.  Since Donavon had repeated Kindergarten, the material he was learning was familiar to him so learning deficiencies were undetected.  It also didn’t help that his assigned teacher was gone for most of the year on maternity leave so substitute after substitute was brought in.  Each one had to learn the students and, of course, changed the classroom to their teaching style.

Now things were steady and he settled down into a predictable routine.  We began to see inconsistencies with comprehension and math.  He was doing great with concrete ideas but anything that required abstract thought was difficult for him to understand.  For example, he could understand the concept of 12 + 5 = 17.  However if you ask him, “What happens if you have to put fruit in lunch bags and have 5 pears and 12 peaches.”  How many lunches can you serve?”  He gets confused with what you are trying to get him to compute. 

He struggled a little bit but second grade was the height of the struggle.  Indiana has a standardized test called the ‘ISTEP’ test.  This is the product of the ‘No Child Left Behind’ initiative.  Every teacher is now trying not only to teach the principles of reading, writing, math, science, and so on, they are also now trying to teach the students how to take an ‘ISTEP’ test.  Donavon would try his hardest and would come home, proud that he took his time and did his very best only to have his hard work rewarded with a ‘D’ or an ‘F’.  Most of the ‘ISTEP’ practice tests were reading comprehension and writing.  It broke his heart to study for up to 3 hours a night with homework and still bring home mediocre to low test scores.  All of us were frustrated. 

One of the few saving graces was having Mrs. F for first and second grade.  The consistency really helped with his behavior and securities!  During one of many conferences with Mrs. F, I asked her “What else can I do?  I feel like there is so much more that could be done.  I don’t know the system or even what questions to ask to find the answers I’m looking for.”  She went to the head of the Special Needs program and spoke to her about Donavon’s situation.  The information I received is one of the main pieces of information I pass on to any parent that is in the same boat I was.  I don’t remember, word-for-word what she said but the gist was this…
“You are Donavon’s strongest advocate.  The classroom teacher can only do so much and when she does, it takes a long time to verify suspicions and then run the course of getting the child the help he/she needs.  However, if the parent requests that the child be tested to see if he/she needs assistance or extra services, the school is required by law to do so.”  At that point, I took a deep breath and did something I have never done before.  I wrote a letter insisting Donavon be tested.  At that point I really didn’t know what “tested” meant but I knew it would tell us more about his needs.

Once the letter was written and sent, the ball was rolling and I felt like I was finally getting somewhere instead of just sitting there in the mud hoping it would stop raining.  A conference was scheduled with Mrs. F, the special needs teacher, the vice principal, and me.  I decided that I was going to go in completely loaded with more than enough reason to get him tested so this is what I brought.  First I compiled a complete medication list to show that he was on behavioral medication.  Second, I acquired an official diagnosis from his pediatrician as proof of ADHD and any other medical problems that Donavon had.  It was printed on our Pediatrician’s letterhead and had his contact information as well. 

With all of that information, as well as Mrs. F’s observations and the special needs teacher’s observations (she had worked with him on reading and math with a hand full of kids who needed a little extra help), the vice principal filled out the paperwork to have him tested.  This was April of last year.  The vice principal did tell us that since it was the end of the year, he may not be tested until summer or the beginning of the school year.  We prayed that it would be summer so that he could get assistance ASAP!

Remembering that I am not a professional, just a mom learning and experiencing as I go, the advice I would give anyone in that situation is as follows:

1)    Never be afraid to ask all the questions you have.  When you run out of questions, ask someone to give you more questions to ask.  What you don’t know can and will hurt you or your child!

2)   If you don’t know the system, find an educated guide.  A teacher is always a great place to start.  Especially one who has experience!  Remember, they are there to help your child, and you, succeed!

3)   Study, Research, and learn as much as you can about your school’s procedures, the district’s policies, and the state’s laws!

4)   Take a deep breath and take it all one step at a time.  It is a steep mountain to climb but Mt. Everest is never scaled in 1 day!

5)   Pray, Pray, Pray and when you’re done, pray some more.  Guidance, wisdom, strength, patience, and anything else you need, pray and ask God to be with you and your child.  Life is tough.  Without God, it’s even harder.  I have clung to him through all of our trials and He hasn’t let us down yet. 

Donavon’s story is only getting started and God has done so much!  He is a living testament to Jeremiah 29:11 which says “I know what I’m doing. I have it all planned out—plans to take care of you, not abandon you, plans to give you the future you hope for.” (The Message)

TO BE CONTINUED…

Saturday, April 30, 2011

Too Little, Too Late?

So, Donavon was put on a very low dose of the medication.  Things were starting to change.  We started to educate ourselves on this thing called ADHD.  Someone explained it to us like this:
Imagine a hamster on a wheel.  He's running so fast and that little wheel is spinning.  When he gets tired, he hops off and shuts down to go to sleep.  Well, Donavon's mind is like the hamster on the wheel.  EXCEPT, he can't choose to get off!  He's stuck running and running.  It's hard for him to concentrate on something when the wheel keeps spinning.  So, the medication is to help the hamster slow down enough to hop off if he wants to.
We saw a bit of a difference at first.  He could slow down and focus for a bit longer but we also saw him up later.  He still wasn't catching up in Kindergarten though.  At that point, we had to move.  We knew the transition wouldn't be easy for Donavon, but it was unavoidable.  Our family went from a family of three to a family of five...overnight!  So, we had to get a bigger place.  Donavon was excited to get a bigger home.  He even got to pick his room.  Because of the move, we were able to enroll Donavon in the new school in Kindergarten and he didn't have to see his friends move on without him. 
Then we saw his classroom.
*SIDE NOTE*  Creativity is great.  Inspiring creativity through creative floor plans for classrooms is great too...IF the child does not have ADHD. 
Donavon's school had an "open floor plan", which meant that there were no doors, just an entry way shared by two classrooms with a divider.  As a child with ADHD, his mind is looking at everything that moves, makes a noise, or is bright or shiny!  Anyone who walked by in the hall took his attention.  Any noise from the class next to them turned his head.  To add insult to injury, the teacher was out for the majority of the year on maternity leave.  That meant substitute after substitute.  Donavon struggled for most of the year.  The only thing I believe that got him through was the fact that he was repeating all of the material so it was familiar!
Donavon was now six.  He had survived so many physical difficulties including being born  three weeks prematurely by emergency C-section, abused by a babysitter as an infant, RSV at six months old, frequent respiratory problems, and MRSA.  Then they began to look at his kidney and bladder function.  Donavon was still wetting his pants.  What did that mean?  He wasn't stopping to go to the bathroom or he couldn't hold it long enough?  Whatever the problem was , we had to fix it.  He was in tears every time he had an accident because it was embarrassing for him.  He felt like he had failed and disappointed us!  We were following all the rules.  No drinks two hours before bed time.  Set the timer for every two hours for continence training.  And, of course, the Doctor added a pill to help strengthen his muscles.  It helped the full on accidents, but didn't stop the "leaky faucet" type of dripping. 
We were referred to a Urologist who decided that the cause was regrowth of foreskin.  SO, one more trip to the hospital.  After Christmas, January of 2009, Donavon went in for corrective surgery.  He was circumcised.  He was a trooper!  I was so proud of how brave he was...and always is in the face of another medical procedure!
Now that this hurdle was jumped, we had to re-focus on his education.  He was going to pass Kindergarten but I was sure that he wouldn't be able to sustain a passing grade in the environment he was in.  At that point, I put him in for a transfer to a school that was actually closer to our house, but didn't provide bus service.  It was the best move we have made so far!
I learned, that year, that I am the only one who has the power to stand up and fight for him.  I am the coordinator, the circus master, or project manager that organizes all the teams working on or for Donavon.  It is my responsibility to make the decisions.  I have to choose what is best for my son.  You can take what they tell you and have no control while watching your child slip away, or you can be a mother/father and take control of your children's well being.  I chose, that year, that I was not going to just let everyone tell me what to do, and feel helpless as my son gets tossed to and fro.  I am going to be there every step and orchestrate the whole thing to make sure he has the best childhood possible!  It's never too late.  In fact, the sooner the better.  As soon as you understand it, that is the time to act.  And I did.
TO BE CONTINUED...

Friday, April 29, 2011

A New Outlet

Well, here I am.  A 28 year old mom trying something new.  I want to be clear from the beginning.   I am not doing this to provide any kind of advice, professional therapy, or medical remedy of any kind.  I am simply a mom sharing experiences, thoughts, frustrations, and, yes, even the occasional successes in an effort to journal the fantastic and chaotic journey that is ADHD. 

I am also NOT here to debate the existence of the disorder, or the over or under diagnosis of it.  I am simply here to vent.  SO, without further ado:

Donavon, my 8 year old son, was professionally diagnosed by our pediatrician when he was 5 1/2, spring of 2008.  We knew he was different from other children in that he was behind on a few developmental things but between the ages of 3 and 5 it became more and more apparent that he was not the same as his playmates.  There are quite a few things that frustrated us but at the time he was an only child and so we were working with him constantly which, in my opinion, made a lot of difference. 
Donavon is an exceptionally outgoing child.  He is very happy, most of the time and will talk to you till he passes out or sees something more interesting and will halt in his tracks and head in that direction!  We always considered that an endearing trait that he possessed.

The summer he turned 5, I gave birth to fraternal twins, Nathan and Maya, both of whom are now 3.  Needless to say, my hands are overflowing!  At first, Donavon was an awesome big brother but when the twins were four weeks old, Donavon was hospitalized with MRSA in a bug bite.  Long story short, the picking "tick" that is associated with ADHD, caused him to pick at a mosquito bite on his leg and he contracted MRSA.  He could not touch the twins or even be in the same room with them for about three weeks.  We all had to undergo antibiotics!  It was a mess!  That incident really set Donavon in an attention war.  We were torn between newborn twins and our quarantined son!  I usually had twin duty since I was the milk machine!  Donavon, being a boy and still tugging on mamma's apron strings, went through a tough roller coaster.  He had lots of fun with Grandpa, Grandma, Auntie, and Daddy but could not get enough Mommy time.  And, because MRSA is contracted by saliva, I couldn't get too close because I could have been the carrier between him and the twins.
Then he started Kindergarten.  Looking back, it was a mixed blessing.  I'm glad we started him early (he was the youngest in his class since his birthday was just before cutoff) because we were able to better gage just how different and special he was.  However, he also struggled with some of the minor things.  For example, he tried so hard to learn to tie his shoes.  To this day, he still has some trouble and usually ends up tying knots a few times before he gets it right.  He would practice and practice until he cried because he just couldn't understand the steps.  All of his evaluations came back excellent in most areas.  Now, in Kindergarten, he had the Red, Orange, Yellow, Green cards.  Green is the best.  Red is the worst.  That one was a phone call home.  Black was sent to the Principal.  He seldom went further than Orange.  I do recall that there were some substitute teachers who didn't know him very well, and got frustrated easily.  I got phone calls those days.  His reports were something like this:
DONAVON is a happy, outgoing student.  However, we need to work on excessive talking and roaming around the room. 

On many occasions, I would get the phone calls.  Mrs. A. was a great teacher, but we couldn't seem to get past these reoccurring problems.  One after another, we would discuss the issues on phone calls, notes back and forth and Parent/Teacher conferences.  Then, spring came.  Spring break, I had a check-up scheduled to see the Doctor so he wouldn't miss any more school (he was sick a lot that year).  When I talked to him about how frustrated I was with his education, he gave me the evaluations for me, my husband, and the teacher to fill out.  We scheduled another visit for two weeks later.  At the second visit, he decided to put Donavon on the lowest dose of medication (I'm not looking to advertise for any drug companies.  If you really want to know, inbox me, and I'll tell you what it was). 

That was it.  ADHD.  It explained SO many things.  A lot of our whys were answered!  I cannot tell you that medication was the "miracle" we were looking for.  Far from it!  It was simply a turning point in the story/journey that is ADHD. 

A wise person once said "Insanity is doing the same thing over and over and over, and expecting different results."  We were going insane.  But then we tried something new.  And wouldn't you know, we got different results!

TO BE CONTINUED...