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.
 

SIGH

I try to be patient, and I said I try.

Every day and every night I have the same conversation with my child.  Mainly about dealing or making the everyday life skill choices he needs to survive in the real world.  He tells me he knows and he tells me it isn't an issue.

Then the night comes and we haven't done what we needed to do.  Yes, I can stand over him every night to make sure it gets done, it is only 10 minutes to take his medicine and get ready for bed by brushing his teeth and getting on his PJ's.  Easy right?

So you come home after driving one to robotics and the other to gymnastics to turn around and run an errand to come back to pick one up (20 min. ride and thankfully there is someone giving the other child a ride) and to bring the child home and not have him touch everything in the car since he had a slice of pizza and there is red sauce all over his hands and remember this child knows what he needs to do before bed.

So you are very tired of running around and you want to do something for you or just being on the go like many parents, you want to sit and not think.  You want a moment.  But you do have the other child to go and check up on and also to look over his homework because your husband is in bed asleep since he has to get up at the crack of dawn (thankfully I do not have full time paying job outside the home) working part time is hard enough and then when I have a lot of hours... anyway, you just want to plop after all the running around since they have been home you want to stop thinking. 
So you go and say goodnight and the child is reading a book in bed.  He is still in his street clothes and you really don't want to ask but you do "did you take your meds?"  or yeah I think I did, no maybe I didn't.... and so he goes downstairs and then gets upset because his brother is in the bathroom and he should be brushing his teeth.  Well honey you have been upstairs sitting on your bed and NOT getting ready that you really can't get mad at your brother.  He is taking his turn which you lost by sitting on the bed and not getting ready for bed.  Does he get this?  No it is his brother's fault that he cannot get ready for bed, however, he still needs to complete the first task of taking his meds.

Now this is pretty typical of most kids with ADHD, ADD etc.,... but this is the senerio every night and I mean every night.  He cannot or will not do this on his own, he won't creat a chart or write it down or what ever else the "powers to be" think he should do to help him because it doesn't work.  He needs the external brain, one to tell him and remind him.

He is in bed now, and I am afraid to go upstairs to see if he has on PJ's or brushed his teeth.  I am ok if he is not as long as he at LEAST went to the bathroom to go potty.  Again this is critical thinking on his own.  Oops just now I heard a drawer drop or something of his and another noise.  I dare not go but I think I have to REMIND him to get into bed and turn off the lights and try to sleep.  I think he took his meds now or attempted to and not going to worry about his teeth he can sleep in what he has.

Then in the AM we will go over this routine and I will politely ask me what he has done to get ready for school.  He will tell me and then tell me what his brother is or has not been doing and it really doesn't matter because he will still be in his PJ' or whatever he slept in and NOT eating breakfast or NOT taking his meds and NOT getting ready.... because he knows what he needs to dohe just needs someone over him to keep him guided or on task.  But that is my job but then if I am working I have a hard time getting ready for My job.  Will he get a normal routine??  I don't know I can only hope.

 

looking back

Someone posted on Facebook about their relationship with their FASD child and what they have gone through etc.  I think about Brandon and what I want for him and what does he need from us.

School thinks he does just fine because with FASD they hide what they don't know or understand very well.  They can mimic someone else to get by but how long can this last?

In Kindergarten Brandon used to go to the library once a week.  Every week he brought home a book BUT it was the same book.. "In a People House" by Dr. Suess.  He didn't bring any other book home.  He had learned to go to the library and pick out a book and check out.  What he couldn't figure out was that he could check out anybook.  He has his structure and routine on what to do and he kept it the same.

In first grade he had a pal named Tracy who helped him out and kept him organized.  I think she picked out his books and showed him what to do.  I believe the first week of school he brought home the book "In a People House" by Dr. Suess.  After that, he had a helper in the library and had different books.

Second Grade came along and he would pick out a book and each week it was a different book and he didn't have a helper, was he getting it?  Not really because now he was getting the exact same book that his brother had got from the week before.  He was literally seeing his brother come home with a different book so he realized he could but didn't know which book so he got the same one his brother had got from the prior week.  He was mimicing his brother.

By fourth grade he was bringing home books that were so far advanced for him but they were the books he saw other kids get.  He would want the BIG chapter books but could not keep focus on one sentence if the printing was small.  Thank goodness we were getting books at the school library and regular library.  He was not reading any of the books he brought home.

Now he is in 8th grade, he doesn't have library time or books and he reads books that are simple and he reads the same chapter over and over and reads where ever he thinks he should.  He does not read from chapter 1 to chapter 2, he reads a chapter anywhere in the book, so if I want to know how far he is.. he picks a chapter and reads it.. , I have tried to introduce some chapter books but that doesn't work too well with him.  He mainly is reading graphic novel and comic books, over and over. 

However, I have notice that he can have someone read to him and he can understand it pretty good.  Considering he can't follow a two step instruction and seem to listen to any direction he can understand someone reading a book to him.  Does that make sense?





 

how to

I am trying to update my blog and start writing more and now I am adding options and I don't know what is happening.

I am hoping this is working.  I don't get circles and I don't get the new google.  I don't know what is happening and I am getting frustrated.

I keep adding things and I don't understand, so I think I will STOP and try later when I can spend tons of time figuring it out.

New school year and life

With a child that thinks differently as a parent you MUST think differently too.  It is not easy and sometimes you are ahead of the curve and sometimes you are way behind.

Brandon has a hard time to adjust to school the things that upset him would not upset you or I, but they do to him.  I have to respect that and sometimes I can and sometimes I just can't.  Because I don't understand where it is coming from.  So you have to look into his world and see where he is coming from all of this and then it can make sense.

One thing about a child with FASD is that they can recall things.  However, they can recall things when they can and NOT when YOU want them too.  So even though they can doesn't mean you can ask them a question about yesterday and get a correct answer.  You many not get the correct answer until a week later or IF you know exactly what happen you can prompt.

However, if you prompt a child, he will figure out which way you are going and tell you what you want to hear and again NOT what it is.  So it gets frustrating and you spend time on very important information and try to mold him/her.  Kids lie and make up stuff but a child with FASD can't.

FASD children can't make up stuff they are very black and white and sometimes I get stories that don't make sense and then I realize he is pulling from past experiences and using tools that he has learn today.  Again not a reality in this moment, but over time it might be.

So I am learning to smile and nod and when my child is so frustrated the language that comes out of his mouth (I don't care if "kids this age" use it) I have to ignore him.  His world becomes very small and then he has to do things that make him think.  Video games don't make him think, they make him spiral out of control and he knows it but he isn't happy.

However, I think after a week of two of the constant you will and what he will do he is learning it is ok to sit and think and reflex.  Whether he will be able to apply it, we shall see.

is this workin

I have blogged recently and I now notice it is not showing up on the blog page.  What am I doing wrong? 

I know I had to change my password and luckily I kept it out there because I can't find the paper that I wrote it on to know what it is... I hate the new google system.  It gets me frustrated.

Anyway, we are on to a new way of life and school year.  It will be a nightmare around here for the next few days but I think I will manage to get through it.  My son has grabby hands and well he took a few possesions from his cousins house. 

luckily it is an older cousine that no longer lives in the house, and this is his old junk... but grabby hands and anxiety does not make this acceptable.  So we must work on this.

What can he do when he is nervous, versus taking things that don't belong to him and putting it in things that are not his into his pockets.  So he will be watched a bit closer, snuggle a bit more to know he is loved and having his pockets checked.

He will have to learn a new coping skill that will help him figure out what to do when he feels the need to touch and take othere peoples things.  Luckily it is family (not in stores or friends home) just his brother and cousins.... still how to handle the anxiety and grabby feeling so he does not put his hands on things that don't belong to him.

Hopefully once school begins, he will be able to relax (at least a little bit) so he won't be so full of anxiety and will make good choices.


 

People are idiots

Bad name for the title of a post, I know.  However, I get very frustrated when I have to explain to my kids why somethings are the way they are but it really has nothing to do with them (although it does in a round about way) but it is the ADULTS reaction and dealing with things that well let's just say stink or is stupid.

We had a situation awhile ago.  Instead of the person talking to us and really learning the "whole situation" and how things could of happen decided that after making one comment, that was that.  Well for a kid with brain damage, that is that is not it.

What has happen?  Don't really know but ask a kid with a brain damage brain you get answers that you want to hear and not what happened.  If it is good or bad, well you deal with it and move on because things are not intentional they are just having fun or going with the flow.  This is why you watch a child with FASD and who they are playing with.   If the other child is aggressive, your child will be, if the child is gentle, your child will be gentle, if the child is stupid,,, hey your child becomes more stupid.

Brain damage kids don't think, they follow along with what is going on.  They enjoy the moment.  They can't take anything from the before and apply it, it is ALWAYS in the moment.

They live in the black and white world.  So when things don't add up because of some fuzzy grey issue, it doesn't matter to an FASD peron.  They won't understand, and they can't comprehend it and then it becomes "an issue" because they can't take the fuzzy grey and learn to deal with it.

They get frustrated.  What upsets me the most is when the "adult" won't take the time to look at a situation from all angles.  It is just "my child bad" and her child "does no evil."  Even though I have seen said child outside screaming and yelling and banging things around. 

I am one to "not" assume my child is innocent and the other kid is bad.  I want to know to help corret.  However, there are many parents out there that are quick to point a finger without any detail or information to back it up and be done.  It doesn't matter what their child did, your child is at fault because they can't believe their child did or Lied about something to make their life easier.

So the brain damage child is lost and confused.  Why can't he play and why does everyone hate him because he has done nothing wrong in his mind.   How do you tell him to deal with it or to ignore it and that is the adult in another situation that can't handle it.

If the adult is not the adult, how can the kids be raised to be responsible and respectful.  I see more and more adult parents, quick to blame the system or other kids and NOT or NEVER see what their own child is bringing to the table.  I get tired and frustrated with this and want ot go around andjust slap people and ask them why they think they are so special.... because they are not.  They live in their own world and quite frankly I am glad I am not in thie misguided world.






 

Am I expecting too much or what?

As time goes on and you are repeating yourself over and over again you have to go stop.. is it me?

Then I realize yes it is but I am at a loss for change or trying for a change.  I  am like so many other players of children with FASD, you think they are going to get it and they don't.  It is so hard to explain to people unless they see and hang with my child and really have to experience it. 

In the AM he is coming down and bouncing off the ways and wanting so much approval and you are trying to look at your mail, or pay bills or just have a quick cup of coffee.  He doesn't see what he is doing as he invades your space and how much he needs.  So you try to stop doing what you are doing but you can't because you would be doing all day long at 5 minutes intervals.... so then you try to redirect.

It works, he says yes I understand and yes I will get it done.  He leaves the room, and then calls your name and wants some help and then he can't find the one thing he need or he has re entered the room and has never done what he was suppose to do.  OR the best thing is that you go upstairs after the child has brushed his teeth only to discover...

1.  his bed is still not made after telling him 4 or 5 times and he going back upstairs to do it
2.  his bedroom light is on after going upstairs to brush his teeth in the bathroom
3.  the bathroom light is on and the toilet needs to be flushed.
4.  somehow at some point he has possessed a candy bar and there a bits of wrapper on the floor
5.  he did decide the one thing he wanted to wear (sweatshirt and sweatpants) might be dirty :)
     beause he has worn them for 3 days and slept in them for two... but I won't point out it is 80      degrees today and has been for the last 3.  He has to be told, it is warm out wear T-shirt and shorts. 


I think I have stressed my point, the reality is I do this everyday over the same situation over the same stuff... and they say routin is great.  I don't think they are refering to this routine.






 

Do you let the world in

We have been open about our sons.  One in particular and his struggles and disabilities.  Some people see it and understand and support.  Some people think you over react and are too hard on child and some don't see anything and think you are picky.

Are they right?  I am sure their veiw of a "tiny" window in my world would be correct.  But it is not, it is a daily lifelong challange that people don't see.  I saw a quote the other day that was like BOOM that fits.

"when an FASD child has the Walls around him, he/she function fine and appear "normal"  (for lack of having a word for it.)  The support system is in place and it works so no one notices anything out of whack unless they are older and should be doing more than they can.

When the wall starts to come down, guess what... the child comes apart.  Even if you have the wall the child may come apart.  Making his world smaller is fine to help on track. but when a child is in an environment that is pure havoc and discombumbled// ... he will not adapt or learn he will add to the havoc and not stop untilled pulled down.

Do I look the other way when he is too emotionally crippled?  Or do I jump in and try to help him.  I still have to regulate my child.  Daily, and I won't stop.  He needs assistants and I get tired with having to stay on top of it, but I do.  Some people see it and some don't.

I don't have perfect kids, and hey neither do you.  However, I have met so many parents over the years that think there kids do no wrong.  Their child doesn't do anything that would provoke, enhance or create a situation you are in with your child.  It is my child.

WHy?  Because I am very open about him and want to let people know he needs help and assistants and if they can't see it or won't view it than they will NOT help my child the blame will land on him.

I have been told this can occur and I have heard hundreds of stories about it and guess what?  You let your guard down once and assume they "understand" your world when they don't.  My child is the one in trouble.  It sucks because the next hardest part of this is... he doesn't understand why.

No one talked to him in the moment and no one corrected him... or role played.. so he won't get it and what he will remember may not mean it is what happen but more of what he has heard which can work in his favor however, it can be devastating... I hope someday the world or people can look at themselves and ask "how can I help" or "how to make the world safer, enjoyable" and not "it not's my problem"

So for now, I am going to have to close the world in and work with my child and if people wonder why a middle school child is never home alone, or is supervised by adults and rushed home when things get too havoc... and find the things I know he can do and maybe if someone truely wants to help I may let them in our world.

 

Not alone

I  realize it has been a long time to post and that I had really dropped the ball.  The holidays were typical and we hit a bump in Feb. with a neighbor child (a long story) and two boys busy with school and activities there has been little time.

However, since I have stop to look at blogs and re visit some old blogs... I realized, I am not alone.  Some of us have not updated in a long while.  I am not alone and that sometimes you drop off the web world and start all over again...

hoepfully I will keep it up.

neuro feedback

I started last summer with neuro feedback on Brandon.  We are now reaching a point where we are "suppose" to see a difference.  The main difference I see is the frustration he is feeling at school and the yelling and complaining he does to me and Josh.  It gets tiring from time to time that you don't know how to take him.  On one hand I feel sorry for him.  You can tell he is confused but yet he does know what is going on around him and he doesn't know what to do about it and yes it makes him sad.

Then on the other hand, I get very frustrated because he gets so carried away and off the mark that it is hard to talk to him and help him put it into an understanding.  He is so bent on blaming and screaming and making sure we all know how he feels he can't listen to what we have to say.  He is blind to what he is saying and so you can't reach him to understand any situations.

This is when you have to STOP.  Stop listening to him and stop trying to talk.  You can't talk to a drunk.  They hear you and repeat what you are saying but hey... they don't really follow anything you say.  They are a lot of fun but have no responsibility.

So I say we are learning to stop.  We all need to calm down before we can talk to each other.  It is hard to do when you want to go here and there and just get on with the day.  But you can't it is not possible.  So I am learning no talking and no listening to a child that is really just rattling off his frustration and not what he is going through.

It is tough to do and there are days I am NOT good at it.  I try but I want to do things and go places and not live in a world where it is measure by what a child is capable of.   Then it hit me smack in the face... I don't.  I have to prep him about the days that won't fall under the "normal" routine.  I have to explain why we have change things up and how it will effect him.  Again it is the unknown that really is hard for kids; much less a child that lives in a black and white world.

So is the Neuro working??  I am not sure but I notice when I make more of an effort to stay calm and say very little... I have a child that is starting to stop and think about things or say "ok moma" or "yes I can."  He needs time and not our timeline a timeline for him to put it into his head.