Monday, July 21, 2014

Just blogging

I've gotten away from my blogging.  I tried the monthly devotional thing for a short period of time.  But I think I'll just get back to blogging.

So Mason, my 4 year old full mutation decided to paint his walls with poo yesterday.  I'm way over it at this point.  But if it were to happen again, I'm not so sure that I would be calm under the stress of it all.  My husband and I worked together scrubbing the walls.  He did way more cleaning than I did.  As he finished up all the details like the dresser that had it all over, the outlet, and the steam cleaning.  I scrubbed the kid down from head to toe given he had it all over him.  Several people posted information about fecal smearing since.  I read it all.  I understand it can be a sensory experience.  There was something else that Mason did later that day that he got in trouble for that was along the same line but it's escaping me at the moment.  Either way, I can see how that texture is smearable.  The first thing he said to me when I went in there was, "I'm sorry mommy, it's my fault."  I had just said, "Oh my god!", shut the door and walked out.  I needed a few minutes to process what I was about to have to deal with.  I thought we had gotten away from having to duct tape his pull up .  I was wrong.  I only pray that now that it's over, he doesn't attempt this with the pull up duct taped.  He could still make just as much of a mess.  That's the thing.  With the Fragile X Syndrome, you don't know what they have learned and what they understand.  What's to stop him from doing it again.  And everything I've read says to stay cool under the pressure.  Showing a reaction is really bad.  So I PRAY that I don't get put in that situation again.  An example of him not understanding something is every time I let him go out into the back yard to play, he seems to play in the hose.  I say "no hose!".  Guess what, he comes back into the house soaking wet.  Well, I wouldn't say every time or I just wouldn't let him go outside.  But often.  I spank him and take his wet clothes off of him.  He cries and says I'm sorry.  Again, "it's my fault".  But nothing is to stop him from doing it the next time.  Some of it is age appropriate.  Some of it is just his personality.  Charlie learns from a couple of times.  Mason likes to push it.  I suppose I should do the same thing and not show a big reaction.  But it PISSES ME OFF!  I have to go find more dry clothes and get him dressed all over again.  And go down and make sure the hose is off.  It's a huge pain in the butt.  When I catch him, I say no hose!  And he drops it and goes and plays with something else.  I enjoy letting him play in our big backyard.  We are on 3/4 of a acre with a fenced in backyard in a subdivision.  I know he is completely safe.  I guess it's just one of those things I have to prepare for and to remember that he is most likely looking for my reaction.  Most of the time, these boys are good.  I'm a stay at home mom now so they are my main focus.  They really are good most of the day.  And I LOVE that they nap!  That's how I'm able to do this right now.  It breaks up the monotony of the day.  I'll tell ya, I love summer.  But school can't come fast enough.  We are bored!  It's hard to get the boys to go to the pool.  They tell me they are bored there.  ALL they want to do is watch tv.  I try to deter it as much as possible.  We play in the basement, we paint, we do puzzles, we play outside, but there just isn't anything that is really fun that's passing our time.  We are quite simply bored.  When I do try a new activity like if I try to initiate play with puzzles sometimes, they just ignore me and turn on their Nabi's.  Or Mason goes outside and Charlie stays inside and watches his Nabi.  They need the structure of school.  Charlie is much happier on the days that he has summer school.  He goes tomorrow, Wednesday, and Thursday is his last day. 

Mason's IEP is Wednesday to determine if he will go into Charlie's inclusive classroom.  I am very nervous but excited.  It is going to break my heart if the director of pupil services puts the breaks on this plan.  It can be so good for Mason.  As it is, they are just letting Mason lead the aide around and when he is getting overstimulated, he goes in the empty classroom next door.  There isn't a lot of learning going on.  He is staying dry there so I think the potty training is going well.  But I think overall, he needs to be made to adhere to a schedule.  And the inclusive classroom is all about a schedule.  It's going to get him in a routine.  For these kids, their anxiety comes from not knowing what comes next.  So with a planned out schedule, he will know what to expect.  And he will know what is expected of him.  And the teacher, Robbie, already assured me that Mason will be offered an opportunity to lay down during the day.  (He will be the youngest student in the classroom.) 

Anyway, I hope the next time I blog, it will be able how Mason was approved.  Oh before I go, Charlie is doing AWESOME on the potty!  He's very motivated to go in and poop for a pickle!  I'm so proud of him!  We were telling him that soon, he will be able to wear underwear and he won't need pull ups anymore.  I'm not sure what he thought of that.  But I pray that it's true.  We do have a lot to be thankful for! 

Thanks for taking the time to read about my life with my two boys with Fragile X Syndrome.  God bless!

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