Summertime with Special Needs Kids... Oh boy...

   Hi. Today is officially the first day of summer break in our house, and therefore, a chaotic time for us. Like all mom's, I long for the lazy mornings summer brings; those days when, in general, you don't have to be up at a certain time or go through the whole "riggamaro" of the school schedule. Today it seemed to get off to a great start. Rick fixed the girls breakfast before he left for work, and then set them up with a show, and they left me to sleep in peace until almost 9:00.  Upon awakening though, I was quickly reminded that,  in my house,  because I have two special needs kids who thrive on schedules and structures, that even if they can get their own snacks, drinks, etc., and can entertain themselves for an extra hour while I sleep in, sleeping in is not going to work... It's not going to work, because they have additional needs that neuro-typical kids do not- they need that structure and organization to their morning to start their day off right, they need to know when mommy will be up, when it's tv time, when it's freetime, naptime, etc.- you get the picture.  On top of all, they ideally need lots of mentally "organizing" activities- movement that works the large muscles of their body to get it communicating with their brains. 

    So I'm feeling very disheartened, as well as frustrated with myself that I continually try to trick myself into thinking that somehow, today, things will be better- that their sensory issue won't get in their way, or that the anxiety of not knowing exactly what the summer will bring will not be there... I'm disheartened because I'm dreading summer, and I WANT, more than anything, to enjoy it with my girls. The truth is though, that that schedule creation and adherence falls on me, and I don't feel like I have any energy left to give to it... I need a break, and it's only the first day of summer... how are we going to make it three months, I think.  

    This brings me to having hope, and how it can be a great thing, but also a frustrating thing.  I think that few would argue that hope is a good thing to have, it's a key element of and intricately laced in with faith that  keeps us going in the tough times... without hope for a brighter day, we would have no faith, because their would be nothing to be faithful in, and without faith, we wouldn't have any hope... Hope however, is frustrating at the same time, because, if we are not careful, it can also lead us blindly into thinking too postively or unrealistically about situations. False hope I guess they call it....

     I have such strong faith, and truly believe that a day will come when my children's needs are not so in the forefront and so dependent on me... But I worry sometimes, on days like today when my false hope has been shattered, that that is never going to happen. This opens up a host of feelings, sadness, bitterness, anger, etc. that are all counterproductive to living with deep seated faith that things can be better.  For things to be better, though, I have to do my part, and today, I don't want to... I want everything to be easier... For Zoe to be more "present" and "engaged,"  for Abby's emotional meltdowns to stop, for her to follow directions, for her mood to be stable. Self admittedly, I'm feeling sorry for myself today- God dang it, I just want a more typical life, God, Why me?  I have a hard enough time managing my own moods and mental clarity, much less making schedules and sticking to them...

    Sorry for the somber mood, but that's sort of the purpose of this... to gain clarity and insight into what the true issue at hand is through writing. The writing slows my thought processes, allowing me to stop ruminating on the negative, and identify what's really going on inside... what my true feelings are. Someone once said to me that the definition of insanity is doing the same thing over and over again expecting different results.. and i guess I sorta feel like that's where we're at with Abby at least... With Zoe, maybe I'm remembering wrong, but it never seemed like such a struggle to find methods of teaching and discipline that worked for her.  Although rule bound to a large degree, she's also very logical, and so if you can give her a logical reason why a particular pattern or rule needs to be changed, or can help her logic it out, she's generally good. She's also much more controlled (less impulsive) and predicatable behaviorally, and because she's rule bound, if she knows a rule, she's gonna follow it for the most part. We also got answers as to what was going on with her fairly quickly which helped, because we could read books, etc.  

     

With Abby, though, it feels like were banging our heads against the wall.  Seems everything we try backfires....and we keep trying it because that's all we know to do... and all we've been told to do...it's looking like she's likely bi-polar, but we haven't found any really good info yet, or methods that work. Her moods change on a dime, she's explosive, impulsive, and down right strange sometimes... Then there's this sweet kind, gentle, playful girl that shows up sometimes for weeks at a time. We just came off three really good weeks with her... Which is something to celebrate, because that's the longest stable mood she's had... Problem is though, that there was nothing tangible we could connect to that allowed that to happen. I'm ready for answers with her, it scares me to not know what's happening, or even having atleast some vague idea what her future will be...

   I think sometimes I get to that place of false hope because I'm so scared of what's ahead of me, of the not knowing, I become paralyzed by that fear, which makes me be more selfish,  disables solution focused thinking and taking action to prevent problems rather than addressing them retroactively. In the end, it really doesn't matter what the future holds. It's important, but not AS important as functioning well today. Today's post was sorta of somber, but  don't be discouraged or worried by it... When I take a step back  and remove my own selfish desires from the picture, I know that God has a larger purpose in mind in allowing me to experience this life. Or atleast that is what I'm choosing to believe so that I can regain faith that my summer is not doomed, we will in fact get our act together and have fun- it is only the first day of summer after all- I should give myself a break! I can have this faith and hope, because I love my girls no matter what, I love myself no matter what, and I know we all falter sometimes... The key to the happy life, at least for me, is remembering to think about the progress we HAVE made, and boy is it alot! We've come a really long way, even with Abby.  Change doesn't happen overnight, and definitely involves hard work!

    

     I close this by saying that I am eternally grateful that, despite frequent bouts of doubt regarding my ability to handle all this, God sees me fit to raise two beautiful, unique and precious girls, and to assist him in helping them reach their fullest potential!  I also leave with a question for all of you:  How do Hope and false Hope mainifest in your lives, particularly for, but by no means limited to,  those of you with special needs kids.

Thoughts for the day:

-"I didn't have to scramble up and down the ladder from despair to euphoria anymore, trying to convince myself that life was either painful and terrible or joyous and wonderful. The simple truth was that life was both. p 214"
— Melody Beattie (The Lessons of Love: Rediscovering Our Passion for Life When It All Seems Too Hard to Take) 

-"Like it or not, i was already learning that in the worst and darkest time, I would find specks of light, moments of joy. What I didn't want to learn was the other, harsher lesson - that in life's brightest moments there would also be unbearable pain. p 87"
— Melody Beattie (The Lessons of Love: Rediscovering Our Passion for Life When It All Seems Too Hard to Take)

- I pray for faith that my future will be good if I live today well, and in peace. I will remember that staying in the present is the best thing I can do for my future. I will focus on what's happening now instead of what's going to happen tomorrow. 

___From The Language of Letting Go by Melody Beattie