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!!

The Carefree First Time Joys of Parenting

Despite being my third child, William is really giving me so many joys of the first time parent.  He’s in that incredibly fun stage right now where his development is exploding, he’s just learned to walk, and the whole world is his oyster.  He oooo’s appreciatively when something interests him, whistles like a tea kettle when he’s happy, hoots like a train when he’s mad, and his favorite pastime is toddling around the house, waving items he’s found and yelling “Whoa! Whoa!”

We were sitting in the rocking chair the other day reading a book together when it struck me.  I had never been able to sit in a chair and read a book with Michael or Gabriel.  They just couldn’t do it.  Michael was three years old the first time he was able to sit in my lap, and Gabriel didn’t understand how the reading aloud activity worked.  Then some of the other differences started coming to mind.  At fifteen months of age, William already has about half a dozen discernible words.  Michael and Gabriel were well into their thirty month mark before we heard anything we could understand.  William mimics me and REFERENCES me, things I’ve never seen before.  He has more enthusiasm about exploring and engaging the world around him.  You can just tell it’s easy and fascinating for him.  I don’t have to work at communicating or interacting with him.  I don’t analyze everything he does.  It’s different celebrating a new skill acquired when it came naturally instead of after hours of teaching and practice.  It’s just fun.

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I thanked God for giving me these little moments, they were special gifts from Him, the wonder of learning and growing, the carefree first time joys of parenting.  It’s more meaningful and bittersweet watching Michael and Gabriel meet their own milestones because of the effort and years involved, and I am incredibly grateful that the Lord has brought as much healing and restoration as He has to them.  But little William is bringing me new and special joys of his own, and I’m loving it!

Vacation Started a New Journey

Quick post today: I learned something on vacation.  It seems like it should be intuitive, but I guess it wasn’t for me.

I need help.

I’m still learning SO many things about myself with regards to my own limitations.  I’ve gone on for so long assuming that I function like those around me, and it’s just been in the last few months that I realize how different my brain is.  The more I try to carry on like everyone else, the more I struggle and the more stressed I become.  I don’t cope with things the same, and I have different stressors.

What this boils down to is I’ve realized I have no idea how to cope with my stress.  This is not a mental thing I’m talking about, this is more of a physical one actually.  In doing some basic research this morning, I learned new things about how in spectrum folks, the sympathetic nervous system isn’t disengaging and allowing the parasympathetic nervous system to turn on and actually bring physical calm back to the body after a stress has occurred.  So in my life, all the random little things (in addition to all the crazy huge things that come with living with disabled children) that happen that folks can recover from (i.e. loud noises, unexpected phone calls, disruptions in the daily schedule, etc.), I’m not getting over them, I’m accumulating them.  Which is why by the end of the day I’m usually a mess that needs some crying time under a blanket in a quiet room.

God has provided some wonderful young people to our family that like our kids and are VOLUNTEERING to spend regular time with them, and I am totally taking them up on it.  I also plan to start researching help and information on adults (not just for my kids), and see what I can learn about things like organization and stress management for those with ADD and Asperger’s.  I think if I learn how to function with the specific “bends” of my mind instead of just carrying on in the what always appeared to be the traditional way of handling things, my stress levels will go down.  I’ll find counselors who deal with spectrum adults if I have to, but I am really excited about learning to cope with the things that go on around here.  Usually my mind gets so overwhelmed that I just completely shut down and let chaos reign, and that’s not the kind of wife and mom I want to be.

So here’s to a new journey and learning more about how God made me. 🙂

In It Again

Vacation was amazing and absolutely necessary.  Thanks to my in-laws, Nate and I were able to get away for eight days, which was a perfect amount of time.  I noticed I was so exhausted and wound up, it took me about four or five days just to relax and feel like a normal human being again.  It was a gift from God that Nate’s office paid for us to get away, and now that we have experienced the benefits of it, we are planning tiny breaks for ourselves in the future.

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This is us, when we feel like normal people. 🙂

So we’re back in it again, with the therapy and the yelling and the no sleeping, but it’s a little easier now once our cups have been filled up again, so to speak.  I find I don’t mind it quite as much as I did before and now I can give of myself to my family more when I’m not so completely drained that I’m just in self-preservation mode.  It’s easy to say we need a break periodically, but I’ve found that the execution is much harder and depends on the generosity of others’ time.  I am very blessed and grateful to be surrounded by a supportive family that is willing to sacrifice to help us out.

Here we go.  William is throwing food on the floor, Gabriel is slam dunking his breakfast dishes into the sink, and Michael has had a number of meltdowns this morning already, but that’s OK.  This is where I’m supposed to be.  Well, more specifically, I should probably be cleaning the kitchen, so have a nice day!

 

From The Bottom Of My Heart

I have to thank all of you for hanging tough with me this week.  It was just terrible, one of the worst I can think of in a long time.  The stress, the emotions, my own brain causing me pain and trouble every step of the way.  This was a downright awful week in my life to have ADHD and Asperger’s myself, let me tell you!  I had a meltdown about three times in the past few days, so let’s not even think about how many my kids had.

You, my friends, are all amazing.  You let me cry, you give me hugs, you pray for me, you call me and Facebook me to make sure I’m still doing alright.  I love that you’re OK with me being a mess and that you 100% encourage me and help me along the way.  I absolutely would not survive times like these without you, and I am so incredibly grateful that God has given you all to me as my support team.  You really are a vital part of my life and therefore in the lives of my kids as well.  Not only are you letting God use you and giving me the strength to go on, but you’re also inspiring me to pay it forward when the boys are grown and it’s my turn to be there for someone else.

I made it to the end of my gauntlet, and now I get to unplug and run away with Nate for a few days.  God bless you all, and really, from the bottom of my heart, thank you all so very, very much.

With love, 

Sharon

A Day In The Life

The last couple of days have definitely been interesting.  You never know what kind of day you’re going to get with Michael.  Some days his brain and body are in sync and you’d never know he was autistic, but then you have days like today….

We started out OK, but he totally hyper-focused and colored for two hours, and I should have known I’d pay for it later.  He went nuts and overcompensated with the sensory processing disorder kicking in.  He was running everywhere, touching things compulsively, pushing his brothers, screaming, squeaking, and losing his communication and self control.  When his therapist showed up in the early afternoon, he sneaked into the cookie jar and ate six Hershey kisses while she and I were in one of the bedrooms talking.  What followed was a 45 minute meltdown which required physical manhandling.  Thank God the therapist was there, it was the first time she had seen him lose it that badly.  She showed me how to wrap my body around his to keep him from breaking free and punching me.  She also kept the other kids out of the room every time they tried to come in.  Michael really took me for a ride, screaming, crying, writhing, wrestling, and flailing with almost no breaks for three quarters of an hour.  We were finally able to talk him down (I would have never been able to do this if I was alone), but by the time we were finished, I was exhausted, shaking, and nearly crying myself.  Thank God Nate came home this evening in time to handle another meltdown because honestly, I don’t think I have another fight left in me tonight.

As I write this, I’m sitting in Gabriel and William’s room, trying to train Gabriel to stay in his bed.  He’s new to the toddler bed and he seems to enjoy keeping William up till very late and jumping into his crib and squashing him.  It’s been a very long day and there’s still a lot to get through tonight.

I have to say though that it helps to remember that this is all important.  It’s a training ground and the foundation for discipline and growth for all of them.  The hard work and effort is totally worth it, and I look forward to seeing the fruits of all the labor in the hopefully not-too-distant future.  I try to use these opportunities to hold these boys up in prayer and remember that none of this took God by surprise, and none of these experiences is wasted.

Hang tough, all of you.

Self-Regulation

Life has settled into a steady rhythm here, but it’s been one of management, not progress.  We’re making it through the day but not much more at this point, and it’s time for our family to take a breath and hit things head on again.

We had an excellent meeting with Michael’s RDI consultant last night, and we are working hard to find step one in his autism remediation.  Right now that seems to be self-regulation.  Michael is brilliant yet trapped in his own world thanks to the autism and almost completely without windows or doors right now thanks to his sensory processing disorder.  His brain will just not leave his body be, and the last week or so has been marked with his inability to sleep and his body’s sensory seeking behavior (crashing into things, screaming at any type of sensory input, the need for heavy muscle work, the complete lack of personal and physical boundaries).  We did go back to the doctor, and I’m hopeful the current treatment will significantly help but it still has not taken it’s full effect, and in the meantime, his brain seems to be struggling to find balance.

Our goal is to ultimately teach his brain and body to self regulate.  Our first method was a good start, but like with all trial and error methods we didn’t quite hit the mark with our first attempt, and now we’re adjusting our technique.  We’re working on separating problems of compliance from problems of self-regulation and attempting different approaches for each.  Again, it’s hard work that will most likely take a long time, but I’m excited at the prospects of watching him progress again.  I don’t like the plateau we’ve settled on or how long we’ve been there.

Is something in your way?  Does overcoming it seem hard or that it will take too long?  Crash into it anyway!  The prize at the end will be worth it!