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 15^th.  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.)

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!!!)

Another Fresh Start

Donavon started 1^st 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…

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...

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...