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.

 

Halloween and so much more

I have to post photos of halloween. 

 

this photo makes me laugh...

 

which is wood and which is Brandon.. then me with my 80's doo ..

 

 

bumming

I typically don't blog of me but lately things have been a bit sad.  We came home from Disney and it is sad to have a nice trip over.  Yet, usually when I come back from Disney I am ready to go back and this time... not so much.  That makes me a bit sad in some ways.  Or not.

My sister who has breast cancer and is "good" will have her follow up tests done this week.  She has been feeling better and doing really good, but her life style is very busy with three kids.  Anyway after the chemo, you get to a place that is like, now what do I do.  It can be a let down because you go from tons of appointments even if it is drs and nurses that will want to see you and get to know you etc etc... then there are none.  It is nice not to have any appointments but what do you do?

So they created a place for women to go and train to do a tri athalon... yes, running, swimming and bicyling.  It is work but it becomes the new goal.  YEah.  So my sister did this.  She did a great job and we all cheered her on.  It was a very emotional thing to watch these woman that had formed a group and that were overseen by doctors was just amazing and wonderful.

My sister told me today that one of the ladies she did the race with and trained with has found out she has cancer in her lungs.  This is not good, this is what happen to my mother and well lets just say my mother is no longer with us.  So it is sad and scarey for this family and my heart goes out to them.

Now as sad as that is, my sister just told me that this girl had posted on "their blog"  about some of the symtoms she has.  It turns out my sister has been dealing with the same issues with her chest.  FOr a lack of better words... crap.  But I am praying and hoping that even with the same type of symtoms that the reason behind them are not the same.  I hope she finds out soon because that is a very scarey place to be.

The other sad note, is a blog I used to read all the time to give me insperation and wonderful ways of telling how to deal with traumatized children, abandon or any type of kids has gone private.  I love her wisdom and her strong belief in the Lord.  I need her strength right now.  Hopefully she will start a side bar and I will be able to read some things.  Luckily my blog following is so small, it is for me. 

BTS stuff

Started another school year.  Same old same old.  Now things will change.  We went to Disney and the boys had a great time but now the homework and missed assignments are due.

Brandon is clueless on this.  He came home angry and disappointed about things.  Some of the things he mention, I get it and understand why they upset him.  However, the kids he talks to me about are the same kids the next day that are his friends.  I can't keep up.  I think they are typical kids that poke fun at him but yet like him enough that they are also nice to him..

However, when he does get teased, Brandon will go over the top trying to get them to stop.  He has yet to learn the real art of saying something once and walking away or ignoring.  These kids will stop.  They know they can get a rise out of him and he will act like a child.  What child would not want to do this for entertainment.  It isn't right, but Brandon't world will be like this so he and I are trying to get him to understand the difference.

Then we have the other child, apparently he laugh when one kid was poking Brandon.  However, once he understood his brother was not happy and upset since he yelled enought for an aide to come by and move one of them.. it hit Josh.  His brother was not happy.  So he told the kid that the person he was making fun of was his brother and not to do it.  The kid was concern and felt bad.

The hard part for Josh is that when we are at home his brother will and does take out all his anger on him in some sort of way.  We are working on this, but to Josh he is an annoying brother.  Too us, we know it will take time for Josh to understand how to help him. 

fasd and the facts of life

It is getting very confusing and frustrating around here.  THe child with the FASD cannot comprehend the end of summer but knows it is coming.

However, I did learn to really interesting facts of fas kids that I will share that I also knew about however, just never put into words.

They will get something on their mind and can't let it go.  They become so consumed by this thought that any logic or world around them is gone.  Case in point, child knew we were going to Green Lake to visit family and some of our friends and the "possibility" of fishing was on the table.  He was so consumed with fishing and wanting to fish that he was LOUD and carry on about everything else.  He could not or would ot settle down to what was happening around him.  He just took things to the extreme.  Then this past Sunday he fished with some friends and when he was done we went home.   He made a two hour car ride home easy and he ate like never before and was happy and content with what was happening.

What happen?  He was so consumed with fishing he was out of control until he went and he did for a short while but it is what he remembered and what he wanted so until then nothing mattered.  He could not articulate that he wanted it so bad but he would by being aggressive in other areas.  Just very grabby and impulsive and like he had to go to the bathroom all the time.  He was just worried he would not go fishing (even though reassured that he would) he could not settle into himself and around him until it happen.

This happens alot with a child with FAS kid that has a lot on their brain and they become obsessed with it and can't let it go and the sad part cannot really articulate what it is... you just have to know and learn them to understand and help them through this.  We figured it out.

Also they don't like to be in trouble (who does) but they will give you the answer you want to hear and not what is happening.  He had an accident the other night and hubby asked if he had wet the bedding... so not to get in trouble (even though he won't) he said "no" well when hubby checked he did have wet bedding and that was not a happy situation.  I told hubby that you cannot ask a question directly to the child because they will give you what you want to hear not what is happening.  So what he needed to do was say to child..'"it seems your PJ's are wet, how are the sheets?"  well yes the sheets are wet so he will tell you they are wet or you get more creative asking these questions than just a direct question.  They are honest but yet know when to tell you what you want to hear.... a mix up of brain activity...