Life with FASD

Everyday I try to stay positive about my child.  I love to cherish the fact that he is very innocent and really looks at the world differently.  Then reality hits and it gets hard.

You have to learn how to take care of yourself and how to manage your time.  They cant' (fasd)  but B can learn this it just takes a lot of time and patience.  A lot of time.  We would like that someday he can hold a job and live a life that makes him happy.  We are in the throws of trying to let him make or try to make the proper decisions on things.  Explaining that homework and house chores are necessary and that video games and TV is a bonus extra in life.  Spending a lot of time on school work with him to keep him up to speed with his class and now we are exhausted.  He can only learn what he can.  He can't learn it all quickly.  He has to have repetition repetition repetition all the time for everything.

So even if we see the progress which we do... how long will everything take.  It gets upsetting at times and frustrating.  For me it is the lack of time I can spend with another child.  I am not mad at my child just frustrated at how to work out the time.  If the children were at two different ages I think it would be easier.  But they are the same age and are at the same level except there are nights I let my one child stay up just a bit longer because he can be responsible.   However, he is the difficult child getting up in the am so that is not a great idea.

I hate to think I really have to have a child stay after school for some respite time but I am really heading there.  Hopefully this will help.  I also hope working with him daily on homework and responsibility we might be somewhere when he is 15.

I am just rambling so early morning thoughts... because I know things get better.

He no longers screams, bangs his head and throw his shoe across the room when trying to get it on.

He can fill out his agenda at school (most times) and get ready to go home.

He changes a completely wet bed when needed.

He can bath and clean up with small reminders.

He does know how help smaller kids make good choices.

I believe in him and need to help him believe in himself.






 

IEP MEeting

I wanted to write a lot of what has been happening as funny and exciting etc but I have been working a lot at the school and I can't find the time to sit down and type.

But I had a vry CONFUSING IEP meeting I had to post.  First off I must admit the school seems to have a great handle on Brandon and his abilities.  They believe he can move forward and learn with lots of reminders and guidances.  They understand his lack of common sense and consequences and that everything he hears is very black and white.  They see his maturity level and that he is trusting and believes in what kids say even when they are making things up.

Now what was confusing is we had a meeting scheduled for a Friday after school.  I have been working at this school as a sub for a class for a para that took a pregnancy leave.  I told the one on one that I had to work until 2:30 PM and that once the kids were on the bus I could make it so could we change the meeting time from 2:20 PM to 2:30??  Sure no problem.

I get the kids on the bus, and I get to the meeting that is already started with my husband and hubby is talking and they are nodding and then they go with the school psycologist about Brandon.  We are in agreement on his disabilities and struggles (YEAH) because last year they felt he was more capable than we did now we are on the same page.  Then the teacher talked briefly and then his one on one set his goals and asked us if we are ok with these.  This all took place in 20 minutes or so.  Feeling very rushed and not focused on this.....

then the VP stands up and says that do to Union rules the teacher must leave the meeting... HUH>>  the Union rules is going to dictate how much time I have to talk with the team about my child??  I only get to spend up til 3:00PM??  Why do I not know this?  Why am I feeling I have to have all this shoved into a time frame when I was told all along "no problem."  My husband gets really upsets and stands up after the VP and his teahcer leaves and says "my child furture is based of what "the union" has allowed?  What happened when the talk is "about the children" but yet we have to be on a time frame??  He was on the verge of tears... so the one on one runs out and gets the VP back into the room.  The VP apologizes and we sit down to discuss Brandon some more but I feel like I am wasting their time.

Why do I feel that?  I don't know, and I know I shouldn't feel this way but I am feeling rushed and overwhelmed and I can't get my thoughts together.  I thought I had an hour and I only was "allotted" a half hour.  The one on one is willing to sit with us and so is the psychologist but I feel like I am taking up thier time I don't feel comfortable anymore and I am sad and disappointed.  They talk of a rescedule and I am like for what???  You gave us the goals and I feel good about them but I can't think of anything because I am numb.  Now I sit and wonder what I should do about this.

On one hand, the school gets my kid, and on the other I felt very rushed and mistreated at this meeting.  But "fear" of making people pissed (lack of a better word) that they don't assist my child makes me want to bite my tongue.   I have to mull this over some more.