Life's little moments do add up..

I have talked before of a child's thought process and how he has little regard to others and stays in his two to five year mentality. It can be exhausting and frustrating because the empathy for his brother or family can be nil. However there have been times when he shows it for others and with reminders or prompts he can have some empathy. Brandon is a good child but has the me me me mentality and is also a very distracted child so you don't know what is on his mind.

Lately though, I don't know if if the patch (see other post) or neuro or the fact that he has been so freaking busy along with his brother that he is worn down to not think and going with the flow. Or just so wiped out that he is or has his family on his brain and things we have taught him. Things that if you are not raising a emotionally challenged child would not really get.

However, his brother stayed home today out of exhaustion and getting sick. This morning getting ready I only woke up Brandon and he ate breakfast and went to school. I mention his brother was not well and was sleeping. I helped him get ready a little bit since I did wake him up late since I wasn't working and only had one child to feed and send off.

Anyway, I was late picking him up after his school activity and I was getting ready to be getting the tone of "why are you late or where were you" etc... instead he saw me coming and came out the door and got in the car and didn't shut the door completely and so he twisted and re shut the door (this is something I always have to tell him) and he said "so how is Josh?" WHAT the first concern was his brother. So I said he was ok and then he said "I am beat." WHAT he is actually admitting he is tired and exhausted but wants to go to robotics and wants to keep going.

Is he so tired he can't think? Then I asked if he had homework and he said Yes and worksheet and proceeded to tell me about some things from school along with what happen at running club. It was a nice pleasant surprise because it was a calm tone of reflection not frustration.

After he comes home, Josh who isn't that sick, is getting bored and I hear him ask his brother to play cards with him and Brandon's response is "I can't Josh I have to get my homework done."

Who is this child??? I know this can be short lived and I am enjoying it and wanted to share since I feel I always share the ugly and not the good moments.... these are the moments too to remember. When you are so busy running from one activity to another you don't realize that some day you might miss it. My father chatted with a friend the other day and the only thing they could talk about was the days when I was in school and he was rasing us kids and how or what we did. They realized that those busy times were the good days and not the retired years without their spouses. So here to the good days and not so good.

Insurance and Meds UGH

OK so Brandon was on the patch and we all loved it.  It took a bit too long to get into his system but once it was in his system it then took forever to get out of his system.  This means he was regulated more than any other ADHD meds he has taken.  This patch stayed in his system and more like 24 hrs than the instant attention span and then the lost scattered brain.  This was definately more regulated.

Anyway, as we venture into the meds and really like the results our insurance policy was adjusted with my husband's firm to make some minor adjustments and yes one of them was the patch.  It was no longer available but we coul purchase it for $250. a month.  Apparently there are other medicines that we can use that have the "same effect" as the patch per our insurance.    So we tried a few and YEP everything got worse.  He would take the meds and come crashing down when it was out of his system and he would be bouncing off the walls until he took it.  I didn't realize how well the patch had regulated his body. 

Then we went to Concerta 10 mg and got to the dose of 30mg.  We sent a letter to our insurance requesting a review of the patch for Brandon and to let us continue with it but we were denied.  The  insurance said we had not tried all the other "less expensive" meds and not tried the "Name Brand Drug" instead of generics so when we went with the Brand Name and got the prescription filled with the Doctors prescription we found out the insurance had to "pre approve" us.  WHAT you just said we had to use these meds in our request for the patch that we were denied through you and now we have to have your "pre approve?"   So as noted above, we start with 10 mg and realized we need the 30mg and since I was approved we order the new dose only to find out we are denied again.  What?  we need to have the new dose "pre appoved" again by the insurance.    Just being approved for one type does not include all doses, and yes that does make sense but when you are in the throws of this it is frustrating.  You call to get a prescription filled only to find out you are denied and have to find out why and who to contact. 

So I took the next measue and went to the state to get approval on our patch.  I guess once your insurance denies it and you have tried everything you can go to the state to overturn.  anyone who works with insurance or has child that needs various meds must know all this.  Anyway so I sent it to the state with letters from the psychologist, therapist and the dr working with him on neuro.  I got the reversal YEAH.  Now my insurance is suppose to pay for the patch.  I got the letter from the local source and from my insurance.

I love all the paperwork that you get from the insurance company letting you know they recieved your paperwork and then when it goes your way you get the letter letting you know they received the same letter and then another letter stating that they will be covering the meds... and yes they did say the patch and they did write the EXACT AMOUNT we have ordered in the past so if he grows and we need to go up a dose... I get to start all over. 

They make more work in the insurance industry for themselves than their customers do.  No wonder health care costs are up.  So exhausting.  But we are back on the patch and things are looking good.  Now when our approval runs out next October I must learn what I need to do.

UGH


 

Meeting with the DR on hormones and growth

We met with a doctor about the boys height and general growth.  Needless to say it went ok.  We will have more information in a week or two about what to pursue.

Apparently, Josh does have more of a growth deficency than his brother.  He is is a better place to get some hormone shots than his brother.  Josh was a smaller birth baby and had less growth development than his brother.  We thought it was due do the lack of nutrition and being malnurished that cause his lack of growth but our Dr. with Endoconology basically said it should of develop by now and that it has not.

Which is sad since I never took him for a full eval because his counts were very similar to his brother's and they said there was nothing they could do for Brandon here locally.  So why take the other child?  However, luckily this specialist knows a few more detail things to look at than my local dr. and may have some hope.  This all depends on what the new blood results show and xray.

Brandon is growing but because of the FASD he might just be smaller stature.  We don't know for sure but even with hormones he may not still produce what he needs due to his brain damage in the uterous to make it different.  Then again do you want a 5' 8" kid running around acting 5 or a 5' child running around acting 5.  Which way would he fit in society.  Unfortunately, you must admit when you see a large kid behaving like a child you question it.

Then again would this give a kid 2 or more inches or only 1-2 " we don't know.  So it will be in interesting ride to see where this goes.

Holidays are coming and life has been so busy lately it is nice just to stop and post the things the kids have been doing.

Only mother's of FASD would understand

We are scheduled to have Brandon's 3 year school evaluation.  I am nervous, his school psychologist said he did great at the testing and may not need services for Language Arts.  WHAT??

This scares me so much and truthfully I want him to fail.  Doesn't that sound sad?  However, when your child is smart and bright and can mimic his world he does appear to be much brighter than he is.  However, he is very much like a 5 year old on so many levels that people don't see.  They see a child with ADHD or spoiled child that doesn't seem to understand but that is far from the truth.

He is a child that can be 13 or 6 or 8 or 2 years old.  You just don't know when it is going to happen and what is going through his mind.  He doesn't know however, in a school setting where they look only at the academics he does great.  But he is a child a small scared confused child that comes home and rants and raves because he does NOT understand the outside world and it is hard to explain it to him. 

So what do you do?  You pray he falls apart and does not pass a class but that won't happen with what is in place.  So do you take away the wonderful bubble they have him in at school and see how he does?  He will thrive in a bubble and when the teachers know what to look for but he won't if you take it away.  He will come apart and he will lose focus and he will get bullied and sadly can be abused because he really doesn't understand things like they think he does. 

It is so frustrating to watch.  Our meetin is schedule next week so I will know more then more than I know now.  So we shall see.

But they won't hold him back if he is succeeding but he is succeeding because of the help along with doing it with help..... not in the classroom and not on his own. 

I never said my child was dumb or stupid, he has a disability that is invisible becasue he looks and socially acts more than he is.  He puts up a brave face and smiles and can repeat what you tell him but not really understand. 

Will update when the meeting is over.