Some Totally Awesome and Amazing Stuff

I have some amazing news I have to share with you all!  Nate and I visited with Michael’s RDI therapist last night, and she feels that he has made enough progress that he is actually ready to start the RDI program.  I am so excited!!  It took about nine months of persistence to get Nate and me ready, the family and house ready, and Michael ready.  We had to learn to be in a good mental place ourselves, and we had to teach Michael some self-control so he could be ready to learn.  But after almost a year, we’ve finally made it to the starting line.

It’s been tough, but Michael’s outbursts are growing fewer and shorter.  He has a lot more physical control over his body, and I feel like I have a better understanding of how to handle him.  Now we move on to the relationship building aspect of RDI (Relationship Development Intervention).  We couldn’t before because just sitting next to Michael usually meant you were going to get kicked in the ribs or punched in the face.

We’re going to start with some exercises that will condition his ability to maintain a role in a relationship.  For example, we’ll play a game together.  It will be a ridiculously simple game, one he could have completed on his own when he was two.  But the point is that I will have a job and he will have a job, and he has to do his job and he can’t do my job.  And that will be hard for him because his autism makes him want to control everything, and his ADD makes him want to compulsively and instantly do everything that appeals to him.

So persistence, persistence.  I’ve been told this takes years.  But I’m still incredibly excited.

And here is another thing that makes me happy.  Here is the first picture ever in the history of the world when all three of my children simultaneously looked at the camera and smiled.  Happiness right now. 🙂

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Love to you all!

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Hustling Project

Good morning!  Just wanted to let you all know we’re doing fine over here.  It’s been quite busy the last few days, but good stuff for the most part.

I’ve stopped writing in the mornings temporarily because I’ve taken up a new project.  Michael’s had trouble sleeping at night.  The heavy quilt he sleeps under is too hot for the summer time.  He takes off the quilt because he’s hot, but then he can’t sleep because there’s no pressure on his body either.  So we’ve determined that he needs a non-hot weighted blanket, which I am now making him.  A few months ago, I had purchased material to make him a quilt, but now instead of putting quilt batting between the layers, I’m filling it with poly beads.  It will make the blanket heavy, but not really all that hot.  I’m excited, I hope it works, and he’s excited because it has Lightning McQueens all over it. 🙂

Here’s a peak.

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Anyway, I’m spending about an hour every morning on it before the kids wake up.  I’m trying to knock it off as fast as I can, I’m hoping it’ll help him sleep better.  He’s still not falling asleep till after 10PM at nights.  I’m keeping my fingers crossed that this blanket will help.

I”ll keep you posted!  Have a fabulous week!

My Billboard

God either has a sense of humor, or he knows that I can’t pick up on subtle and need a big old billboard sized sign that he’s got things covered.  The day after my big meltdown, I saw this:

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Michael was trying to each Gabriel words from the vocabulary cards!!

I sometimes joke that I live with schizophrenics because of the extreme ups and downs the boys go through in short periods of time, but I needed to see this, a reminder of how far we’ve come.  Michael’s therapist is very pleased at the progress he is making and feels that he may soon be ready to begin the actual therapy, now that he is starting to understand physical control over his own body.  While he still may flail and act out, it’s not as often as it used to be, and he now has times when he can calm himself without any more assistance than a verbal reminder.  He does seem to genuinely try to connect with others every now and then, though it’s still in a very controlling and autistic way.  I’m looking forward to seeing some of the RDI progress, watching him learn to work with and learn from others.

And just to make sure life didn’t get boring, I think Gabriel’s starting to potty-train himself.  Should make for an interesting few weeks!  I’ll just keep repeating my mantra: God is good, and he’s up to something.

Happy Thursday! 🙂

I Hope This Doesn’t Make Me a Bad Mom

Disclaimer: I’m having a pretty rough couple of days emotionally.  So much so that I’ve had to invoke the 24 hour rule (I get one day where I don’t have to do anything but feed the children so I can cry, complain to God, and just sit there and sort through all my messy feelings).

There’s been a lot going on the last two days that I’ve had to feel and think about.  My emotional pile was teetering pretty precariously, and then it finally fell over this morning with one of those blog posts.  The one that my timeline is just cluttered with.  Another parent of a special needs child that can see past the needs to all the potential that their child has.  A parent who says their child is better off because of the way they are.

I just can’t do it.

I don’t have that in me.  I always look at those posts and wonder if the people who write them really mean it, or if it’s just something they say to encourage themselves, to keep them going.  Or maybe they really do mean it, and I haven’t gotten there yet, but either way they usually leave me feeling worse, not  better.  Don’t get me wrong, that kind of thing is good, it helps people know and understand, particularly if they don’t have a special needs person in their life.  I just haven’t been able to find it encouraging myself.

I think I know what the problem is.  I haven’t found my silver lining.  I totally and completely believe that my life and my children’s lives were lovingly crafted and ordained by God and are full of purpose and destiny, but today is the day when I’m feeling all the dark things.  That when I look at my children I don’t see kids enjoying life but disabilities that need managing.  I see the therapies and the schedules and the changes in communication and all the hard work.  I see children I invest enormous amounts of physical and emotional energy into who are unable to reciprocate.  I see a lot the dreams and expectations I had when I was all excited about parenting now heaped into the pile of things I have to let go of and mourn.

Maybe it’s my Asperger’s, the fact that when I feel one way about something it becomes the rule, the way I always feel about something, but that’s how I feel about my kids all the time.  I see them this way every day.  Most days I’m more optimistic about our prospects, and days like today when it all comes crashing down on me are few and far apart, but it’s still how I see my children on a daily basis, and it makes me sad.  I don’t know if it makes me a bad mom.  I hope not, maybe it just means I’m human, but I’m going to admit something here that I’m afraid to say out loud.  I don’t really enjoy my kids most of the time.  I love them, I truly do, and I treasure the rare moments when there’s a snuggle that doesn’t involve physical pain from being too close to a restless, SPD body and the few times I’ve written about recently when we seem to have a normal experiences, but even those are bittersweet.  And then my mourning process starts all over again.  The tremendous amount of effort it’s going to take to help my children achieve their potential scares me.  Again, I know it’s a good thing because it brings me closer to God, but let’s be honest, it’s still pretty scary and overwhelming.

I know this is a messy, dark, rambling post that doesn’t sound like my usual self.  I’m not even going to edit it all that much.  I will be back to myself tomorrow.  The 24 hour rule ends tonight.  But this is the underbelly of being a special needs mom, and sometimes it’s really ugly.  I’ve been crying the entire time as I write this because it really hurts today.

I believe that God has plans that promise me a future and a hope, but I also believe in being real with people, and today this is my reality.

 

P.S. I have to thank Nate who is an amazing person.  He has stepped up to the plate and taken charge of the kids and everything since all I can do this morning is sit and cry.  I appreciate you, Honey, and I promise I’ll be back soon.

 

Inventing Games

Michael’s therapist is pleased with the progress he’s been making.  I too have noticed that aside from the sensory issues we’re actually cruising along alright for the moment with just a few bumps in the road here and there.  Being outside a lot this summer has been helping, something we could not do last year.  (Going out alone with a brand new baby, a two year old who could not follow directions, and an impulsive four year old was just not in the cards.)  He’s periodically asking to do school work, and while it’s just busy work he’s doing on his own, it’s getting him ready, his fine motor skills are improving, and I’m happy.

One of the things I have to really apply myself to right now is inventing educational games.  If I try to teach Michael traditionally, it is most definitely going to turn him off to school and we will in no way be able to develop a teacher/student relationship, something he’s not capable of right now.  He just can’t comprehend that someone has a concept that they want him to absorb.  His therapist wants to slowly start teaching him how to work in sync with another person.  This is not just doing something in synchronized motion or even just turn taking, but truly doing an activity with another person in such a way that even if he is just sitting and watching, he is still fully engaged in what the other person is doing.  He absolutely cannot do this even a little right now. This will slowly start training his brain on how to be a student.

While a lot of this stuff is accomplished in our kitchen or laundry room, I’m looking to invent a series of educational games for him so that I can tell the school district he’s learning his letters, numbers, reading, etc.  I’m not great at doing stuff like this in the spur of the moment, so I have to sit down and plan them in advance.  They have to have at least four different kinds of parent/child relationship role playing, probably include some sort of physical activity for some of them, be a topic that he’s actually going to be interested in to stimulate the ADD portion of his brain, and only last 3-5 minutes in length.  I also have to figure out a way to keep him from hyperfocusing on something he really enjoys as well.  Sooooooooooooo….. I’m really curious to see what I come up with!!

I’m starting to have a few regular parenting moments with the kids, and it’s really warming my heart.  We’ve never had these before.  Michael and Gabriel are finally starting to coordinate some of their play together, and they seem to really be getting a kick out of each other.  Of course they fight a lot more now like regular brothers too, but that’s another story.  Gabriel was coloring a picture of some dinosaurs I gave him yesterday, and he announced, “Look, Mommy!  I coloring blue!  See??  The astronaut fighting the dinosaurs!”  (You can totally see the Michael influence there.)  The two little ones seem to be going through growth spurts and are doing some extra napping in really random fashions.  All three of them are as brown as little roasted peanuts from being in the sun nearly every day, and when they’re actively engaged in an activity, they’re adorable.  It’s nice to finally be able to communicate with these little guys after so many years, and I’m slowly learning their triggers and am finally able to preempt some of their crises.  Combining that with me getting some help for my ADD and my ability to run the house a bit more efficiently, things are looking a bit better around here, for which I’m grateful.  It’s still not easy, but at least I don’t feel like I’m just moving from one disaster to another.

I even started the second draft of my novel.  Sure, the boys were splashing in the pool and the baby was crawling all over me when I was writing, but I did it!

Hope you all have a lovely Thursday.

Focusing On The Good Moment

I absolutely did not intend to go so long without writing here, but I have recently learned I cannot think about more than one thing at a time, and my attention had been drawn elsewhere.  I thought I didn’t have much to write about, but apparently I do!

First of all, I’ve been paying a lot of attention to this book: ADD-Friendly Ways to Organize Your Life by Judith Kolberg and Kathleen Nadaeu, Ph.D.  It is amazing, and it pretty much explains why I struggle with everything from time management to clutter management.  I’ve been slowly trying to implement the techniques of this book, and I’ve noticed that after only a week, things have been going a bit more smoothly around the house.  I’m going through the book a second time now and trying to focus more on certain elements.  I love it, love it, love it!  I can’t recommend it strongly enough if this is an area where you have struggled.

Another reason I haven’t written much is because I feel like I haven’t had anything positive to report about the kids.  William’s been cranky, Gabriel stubborn, and Michael’s regressed yet again.  Michael has been a particularly tough cookie the last two weeks.  There’s definitely something wrong or misaligned because the compulsiveness is back with a vengeance, he’s hitting, kicking, knocking things over, and smearing poop everywhere (when is THAT awful plague going to finally go away???).  I’m holding my breath till our doctor’s appointment in nine days.  So I’ve just kept my head down and tried to manage the boys, keeping them outside as often and as long as possible where their crazy doesn’t bother me as much.

I know this is a problem I have.  When all their baggage starts building up around me (and trust me, they generate a lot of it!), it becomes all I can focus on, and I forget how far we’ve come.  Well, God gave me this little gift the other day.

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Michael and I actually played one entire game of Candy Land together!!!!!  This may not seem like much of an accomplishment considering he’s closing in on six years old, but I got this game for him years ago, and not only could he not understand it, he didn’t get you were supposed to play it with other people.  He would just obsessively move pieces up and down the board, not even comprehending the direction of the path.  Anyway, he did awesome!  He took turns, he finally got what each card indicated, and seemed generally happy to actually share the experience with me instead of just doing it by himself.  It helped that the game only lasted about three minutes because he got one of those specialty cards that resulted in him skipping about 80% of the board in one turn and him winning the game.  He tried to play again and his brain just couldn’t maintain the structure that long, and he dropped off and started running the little guys up and down the board by himself again, but it was really neat to see a successful run.  It’s been so long, and we have NEVER EVER been able to play a game together before.

So we’re going to end on that happy note.  Hope you all have a lovely weekend!

My Name Is Sharon, and I Am Chronically Disorganized

Everybody’s taking quizzes on Facebook nowadays.  Well, I took one myself yesterday.

“If you answer Yes to the following questions, you are chronically disorganized…
– Has getting organized been a challenge for you most of your adult life?
– Does being disorganized negatively affect your quality of life in some way every day?
– Have you been unable to sustain organization?”  (Taken from the book Conquering Chronic Disorganization by Judith Kolberg)

Yes! Yes! and YES!

I LOVE this book!!

 

 

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I have ready many a book on decluttering and organizing in my life, but this is the first one I read that was written for someone whose mind does not operate well on conventional/traditional organizational methods.  It’s a short, easy read, and instead of writing theory, the book is literally just a collection of stories that exemplify various organizing techniques for the chronically disorganized.  For example, I had no idea that you could file your papers emotionally!  I have now constructed my first “shifting time” board.  I am super excited and will reread this again before I give it back to the library.

I would highly recommend this for anyone who has tried to fit their lifestyle and organizational methods into a system someone else premade and has been unable to maintain it.  This book suggests inventing ways to manage your life in a fashion that suits your mind’s bend, based on your learning style and needs.  Great read, Conquering Chronic Disorganization by Judith Kolberg.  Check it out!  I shall let you know how my experiments turn out!!