Memories - oh so different

I remember fondly taking Micah on Thanksgiving and Christmas errands.  He would be my little helper making decisions about color, size or type.  It was great and oh how I miss it.  Not only do I miss that my baby is almost 13 years old and he’s not as interested in being my little helper anymore, but I especially miss not being able to do the same with Caleb.

BK tells me not to think about the things Caleb can’t do but what he can.  And I agree with that – most of the time.  But not right now!  I want to take him with me to Build A Bear to pick up a cute little Christmas outfit for a bear.  I want him to help us put all the ornaments on the tree.  I want to make Christmas cookies and let the boys frost them.  I want to buy some Christmas candy to put out for a quick treat.  I want a lot – more than I can have or expect with Caleb.  And it hurts!  I think right now I’m personally hurting because I know what fun I had with Micah and I want to go have that fun with Caleb.  But I also know that I hurt for Caleb because HE won’t have those experiences or memories.

I get angry and frustrated at this disease – whatever it’s name is!  It has taken away his ability to have kid experiences like other “typical” kiddos his age.  I get angry and frustrated that he can’t find contentment and desperately seeks out that one, unknown item to hold that will bring him comfort.  I get angry and frustrated that once he gets excited because he’s having fun that he loses control of his decision making skills & impulse control (and sometimes hurts someone).  I get frustrated because mere words don’t explain his struggles appropriately!  I get angry and frustrated at how this disease has challenged our family – typical disagreements can turn into full-on aggressive meltdowns (and someone usually gets hurt – both physically and emotionally).

It’s a tough day – can you tell?

PS ~ I wrote the above 24 hours ago and after thinking about it, I really want Caleb to have typical childhood experiences like Micah did.  So off we go to Build A Bear last night.  It did not go well.  I’m angry and frustrated that taking him to Build A Bear was just as difficult experience as I thought it might be.  Bless his heart – he doesn’t know any difference but his momma & daddy do L

Here Comes Kindergarten

Someone mentioned to us that No Child Left Behind included provisions for children with challenges to receive services thru the public school system between the ages of 3-5.  That was not completely a true statement.  The “catch” was since he was so young and didn’t have a diagnosis there wasn’t a box the school district could check – and they needed to see the disability.  We still insisted on going through the process of having the school evaluate him in early 2009 – a year and a half before he would enter Kindergarten.  We wanted the school to be prepared for him and for him to be able to transition into a school.  After numerous phones calls and frustrating statements, they did evaluate him.  He did not qualify (DNQ).  Really?  Remember I said there was not a box the school district could check for Caleb, so they couldn’t provide services.

One year later in early 2010 (four months after BK accepted a job outside the home and Caleb went back to child care – and was released, again), we started the process with the school district again.  We didn’t want to wait until the beginning of Kindergarten and felt so strongly that they needed to be prepared for his arrival and I knew it would take months for the process.  In fact, we thought we would help the school by having Caleb independently evaluated at our expense.  He was evaluated by a neuro-psychologist at the Texas Child Study Center.  Turns out he has even more challenges than we thought.  His fine motor skills are impaired and he has hardly any ability to stay focused.  She knows he can learn, the hard part will be determining the best way to teach him so that he retains it.  I was hoping the school would provide services, but at the very least be prepared for his arrival.  So we meet again and I share the same concerns with them.  The hardest thing is to tell someone that your child could hurt other students.  He is very strong and can work every appendage on his body and he can cause some serious pain.

Because he was released from his second child care center and was attending a child care center for children with special needs and struggling there, a wonderful LSSP convinced the school to evaluate him.  We copied all the results of all the tests and evaluations, offered releases so she could talk to anyone and everyone.  She was great and thorough.  At the ARD meeting where they finally decided to have him attend a Pre-K/Preschool Program for Children with Disabilities, the LSSP states, “the only thing constant about Caleb is his inconsistency.”  How true!  They decided he would attend Pre-K/PPCD for the last six weeks of school so they could observe him.

Between the time we started the evaluation process and him actually attending Pre-K he had a change in medications. He had just started a new med right as he started Pre-K and it worked beautifully for five weeks.  It worked so well, that the school determined that he did not require services.   I was 100% certain that he did require services and was not going to risk him going to his home campus without special services and being labeled a behavior problem from day one.  He is not a behavioral problem – he has behavior issues.  There is a difference!

I am usually a tolerant, patient person – go with the flow and believe that people are doing the best they can.  Sadly, in this situation, I am not able to let decisions take their time – otherwise most of the school year would be over.  My husband calls me the Momma Bear.  I have learned that I cannot wait for someone else to determine if my child has special needs or requires special services.  I have to encourage them and then make sure they provide those services.  I recognize there are timeframes that school districts can work in within the law.  My personal feeling is that the law ensures schools don’t drop the ball, but as a parent I want my child addressed NOW!  And I make no apologies for that – and neither should you.  In fact, we will have to go outside our comfort zones on behalf of our children numerous times.  And for us, it began at age 3 ½ and I now understand that I will constantly have to advocate for him.

On Our Own Island

We love going to the beach any chance we get.  BK and I are beach bums at heart and are raising our boys to slip into that mode soon.  But being “on our own island” is not peaceful and relaxing.  It’s lonely.

We went to a pediatric neurologist who recommended a neuro-psychologist.  So Caleb was evaluated and tested – it was the first time it was mentioned that he showed characteristics of ADHD and bipolar disorder (BP).  What?!?!?  I became an avid read on both ADHD and BP.  I knew nothing about them before that day.

Early onset BP is a controversial subject because some professional believe children can have BP and others are certain they can’t.  Not to mention children present BP very differently from adults (so I’ve read and experienced).  We believe Caleb rapid cycles.  Going from one feeling to another very quickly.  And once he’s done (with a fit) he doesn’t remember it.  While he’s in these fits (we call them manic moments – that last a long time), he’s not there.  The Caleb we know goes away, his eye glaze over and looks past us.  When he’s done and exhausted he wants to be held and loved by the parent that was the primary recipient of the fit.  After experiencing a fit for 45 minutes it’s hard to jump to loving mode but we must do it for him.

So now we have three suggestions of what could be Caleb’s problem.  No one wants to diagnosis.  They don’t want to make a mistake or put a label on a child at such a young age or they simply don’t really know.  When I studied the disorders, he shows signs of each of them.  But not one of them completely represents him.

We have a friend that is a doctor and early on he made the comment that we would probably see numerous sub-specialists and go down many paths before we find out what is wrong with Caleb.  How profound that statement was.

Our next stop is a child psychiatrist.  He looked at Caleb’s facial features and mentioned alcohol or drug abuse in the womb.  We later found out that the birth mother did drink during the first three months of pregnancy, we’ll never know how much or if anything else was taken. 

We literally spent 2009 trying 10 different medications to give him some peace.  The real challenge was the need for a diagnosis so you know which med he should take.  If a child has BP and you give him ADHD medicine without treating (medicine) the BP they can have some very intense reactions.  At least that’s what happened to us.  His horrible fits got even worse!!!

Pretty early in the process our first child psychiatrist moved way south and reduced his practice.  We started seeing a psychiatrist that shared an office with the first.  After three visits we never went back.  It is very important that you are comfortable and have confidence in your psychiatrist.  We were blessed to locate the Texas Child Study Center www.dellchildrens.net/tcsc they have been a God-send for Caleb’s psychiatry needs.

There are still medication trials taking pace but he has a great team that wants the best for him – and they know who he is and his story!!!  We don’t have to remind them every appointment.

The great challenge has been his unusual reactions to the medications.  Often he either has an opposite reaction to what is expected or he is the small percentage that has the rare side effects, which is why he has been to a hematologist and a cardiologist.  We now know his white blood count is typically low and that his heart is in perfect condition (finally some good news J). 

Why did we think there was something wrong?

We didn’t – at least not initially.  Things occurred so gradually that we adjusted our lives as he grew and recognized things that were difficult to do with him – such as going to Target or HEB.  It had been seven years since we had an infant and every child is different….we thought he was just a different child than his brother.

Oh yea – Caleb did not sleep through the night until he was 5.  He would wake up (fully awake!) two or three times every night.  He sleeps now, with sleeping medication L  Needless to say, I was exhausted.

He started child care at 18 months (BK was his primary care giver until then).  He loved going to school and loved being picked up.  After about a year and half there, he started really struggling.  At first we thought it was because he changed teachers and classrooms.  Without being provoked, he would get aggressive especially with his friends.  And then he was throwing wild fits that required restraining.  Truthfully, the child care center tried to protect us as parents so we didn’t realize how bad it was – until it was too late and he became a liability.

Someone thought he had sensory processing  disorder (he was 3 ½ years old) so we started occupational therapy.  Do you know how many ways our minds/bodies process all the sensory stimulation that we take in?  I purchased numerous books and found web sites that would give me some insight to this new, new…..what was this?  Unfortunately, after three months, the therapist and we agreed that progress was not being made with the OT therapy.

In October 2008, he was asked not to return to the child care center.  And they loved him!  He had become a liability and they were concerned for the safety of the other children.  We understood, but really – this precious little boy?  BK quit his job and found one that allowed him to work from home while caring for Caleb.

Sadly, at the same time our own home had become a war zone.  I’ve tried to push that time from my memory but I can’t.  We never knew what might upset him – we walked on eggshells constantly.  A simple “no” could send him into a 45-60 minute full-on fit that included hitting, kicking, throwing things, pushing and biting.  We couldn’t get too close because of the pain he could inflict (he wasn’t even 4 yet).  We would hover nearby to ensure he didn’t hurt himself or come out of his room to destroy the rest of the house.  It was rare that we would all leave the house together because we were unsure when he would have a fit.  We began to find ourselves on our own island.



A little about us

My husband and I have spent over 8,400 days in our flips.  We just celebrated 23 years of marriage!  What a blessing it has been!  We spent the first ten years doing what we wanted and BK answered God’s calling and was a professional contemporary Christian musician. But we always wanted children so the decision was made that he would come off the road and take a job in a church as a youth minister.

On the day before our 10^th anniversary we received THE call that we had been selected to be Micah’s parents – what a glorious day that was!!!  So many tears of joy and happiness.  He is a great kid who has been blessed with great talents.  We are so excited to see where God leads him and we thank Him each and every day for allowing us this opportunity to raise this wonderful young man.

We decided we would adopt again.  It didn’t go as smooth the second time but our second blessing soon found us!  After two birth mothers changing their minds, we received a call on a Friday informing us that our precious baby boy was waiting for us.  More tears of joy and happiness.

We spent the first couple of years adjusting to being a family of four.  It’s surprising how another child alters everything J Caleb was a joyful, quick to smile baby.  As he grew we would say that he lived life “intensely large”.  We had no idea how profound that comment was.

Turns out our youngest has some pretty serious neurological issues that continue to show themselves in different ways.  He has been to two occupational therapists, two neurologists, two neuro-psychologists, three psychiatrists - not to mention a hematologist, geneticist and cardiologist.  Those last specialists were because of side effects of medications.

Mood Disorder (NOS)
Unspecified Disturbance of Conduct
ADHD
Sensory Integration Disorder
Sleep Disorder
Some sort of anxiety issue w/ OCD (we think)

The journey has been strenuous to say the least.  "Don't let anyone tell you it's ADHD."  "He just needs to get more sleep." "Some of his facial features could indicate in-utro abuse." "At some point you should think about bipolar disorder."

The medicines....the side affects....the pain and agony of having to make the decision to place your precious young son on intense medications.  But to not do it would mean a continuation of the same out of control chaos we were living everyday.  And he wasn't even four years old at that time.  He has tried 15 different medicines with limited effectiveness.  Or worse yet - the side effects are opposite of what is expected or cause the WBC count to drop or his heart to race too much.  Aaahhh!  I can't stand it!!!

We know the good Lord intended him to be our baby and we thank Him everyday!!!