Monday, January 16, 2012

Manic Monday

Well, it's Monday.  And, does it ever feel like a Monday.  It's my birthday.  No biggie.  Not going anywhere, not doing anything special.  With many upcoming medical appointments, purchases needed, vehicles needing fixing, & selling the house, b-day presents are out for Warren and I.  Again, when you get older, you're not really much into birthdays.  This is supposed to be a "big" milestone.  I don't see it as that.  I'm just excited that I'm here another day & my children haven't made me crazy yet.  LOL.

Warren is home sick.  Had a fever last night but think it broke this morning.  Poor guy.  Kids and their friends are playing outside.  they were cleaning earlier.  We have a punch list we're getting done this week in order to get the house ready.  Have a huge pile of trash now that needs to be hauled off but we'll get there.

We have an FAS Support group meeting this week, I have a focus group, have home school this week of course, speech therapist comes, meeting w/ vocational rehab to discuss Irina, vet comes and a big bonfire at the end of the week at the farm.  Those are the highlights so to speak.  Now, other things we must get done are monumental it seems.  As some of you are aware, we keep a tight "leash" on our FASers in regards to technology.  None have cell phones.  One has an ipod.  Just this Christmas, did my kids get tablets.  Now, I know all their friends have them.  I could careless.  I've seen personally what some of their friends have done w/ such technology...not good.

Well, the other day, XXXX was at a friend's house.  On the computer.  Apparently, she "won."  You know the scam sites, right?  this is the exact reason we have never let our kids use their SS#'s or let them memorize them.  Though she didn't use the SS#, she knew her phone # and address and apparently, that is enough nowadays.  We have a HUGE credit fiasco w/ her.  We will be freezing all our kids credit accounts as a precaution.  However, 2 people we've spoken w/ thus far & explained she is under our guardianship & our daughter & NOT allowed to do things on her own behalf, they were gracious and took names & one guy even purge her from their systems.  Other people, no.  It is beyond frustrating.  I am telling you all this not b/c I want to but to warn others.  We have all sorts of precautions on OUR computer.  We have all sorts of rules at OUR house.  This does not mean it can not happen elsewhere!  Even at the schools.  Last year, it was appalling what her classmates were looking up.  We assumed the school had protections in place.  Nope.  FASers are older yet are mentally about half their age, especially, socially.  There are rude awakenings when they get older.  I am telling you all this as we have children much older than most out here just now adopting.  We keep on top of everything.  Hence, why I can't seem to write back as fast as I'd like to some of you.  Sorry.  Usually, putting out fires at home.  Sometimes, literally.

Anyhow, this is a serious issue.  I know we may seem strict to most "normal" parents.  As you can clearly see, there is a reason for that.  We are going to the bank tomorrow.  We are making sure no major damage has been done to us.  Remember, we'll be selling this house & buying building a new one.  This has also made it clear to us that we must do something we have not wanted to do for a long time.  And, that is legally take guardianship of our childrens' affairs when they reach legal age...18.  As much as we want them to be independent, some times, it just is not possible.  This has been shown to us not only here but in 2 other episodes this weekend w/ two other of my kids.  Maturity is not there.  Clearly.  I urge all you parents of FASers to take steps now to help the kids later.  You may have to make difficult decisions.  So be it.  It's okay.  They will be better off for it in the long run.  I realize now, I should have had them all on SSI from the get go.  I will write a separate post on things I wished I'd done w/ my FASers early on.  We learn as we go sometimes.  I have 6 kids w/ varying forms of this disorder and now another child w/ a disorder that shows symptoms almost identical to FAS it seems.  Joy, joy.  So, 7 kids that will need help throughout life in big decision making things.  We'll be there for it, no doubt. I just want all of you to be aware, some of those decisions need to come earlier than young adulthood.

So many things spinning through my mind.  So many.  Hope we can get it all done.  February is filled w/ tons of medical appointments.  Summer will be needing to see a myrid of specialists. She's seen the regular ped and the neuro.  Next, is an OT and PT eval.  Then, a developmental ped at neuro.  She also needs a ped-neuro ophthalmologist.   Possibly a cardiologist.  Oh, and endocrinologist.  Hey, we'll get there.  These kids are puzzles when you get home and you just need to figure them out.  With her recent dx, these specialists need to be seen.  Well, back to our punch list.  I know this wasn't the most impressive post, but some things really did need to be said.  I know others read this who have younger FASersFAS is part of who they are...for life.  It does not go away and key is to learn how to learn to live with it, not against it.  More to come.  I may have to go buy birthday cake mix.  Irina wants to make me a cake but out of cake mix.  Enjoy your day everyone.

4 comments:

  1. I would appreciate any and all information about keeping my fas child safe.
    Pat

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  2. Happy Birthday, Stephanie! See you in five months.

    Viviane

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  3. Happy "40th" Birthday, Stephanie! : ) I'm guessing, but I know you CANNOT be 50! Wish I was there to make you a cake! And, help eat it! Stephanie, I would go ahead and start the SSI/SSDI application process now. It can take awhile to get into the system and your older kids will probably start needing it right around the time it's approved. Do you have some expectations with them as far as "needing"/learning to pay rent (even if it's to you)? I think it's a valuable skill for them to learn and if they do any work with vocational rehab, that will be something they teach them. At some point, they may be able to live in a group home type setting, where this is put to good use. I'm actually thinking more of a supportive living environment with 1 or 2 other young adults with similar issues. So doing the application process now, will make things easier down the road. Just some thoughts...mine...and if I'm being intrusive, you can tell me! I hope you get your cake! Hugs ~ Jo

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