Tuesday, August 6, 2013

My Summer Vacation

It's time to get back to this blogging thing.  I guess I took a little vacation for the summer.  I'm not sure why I stopped, but what I am sure of, is that there is a direct correlation between my sanity and my sharing, so I've decided that it's time to get back to it. I think it would be a little overwhelming to begin by recapping all that has occurred between my last post and now (and likely boring for you, my beloved readers)  so I'll just give a brief summary of our current state of affairs, and limiting it to what might actually interest you.

First, Nicholas began his pre-summer-vacation weeks in his new school. He made a seemingly very smooth transition, and has seemed happy upon his return home each day. I was worried about the long bus ride alone, but it doesn't seem to bother him, and when I ask him about his school day, he usually smiles when I recap what I read in his communication book.  That's the best I could hope for after him leaving a place that was so familiar to him to begin with a whole new room of people and faces so suddenly (for him anyway....)

 Within a couple of weeks of beginning in his new class, he began using his PECS book consistently in the classroom.  For those who are unfamiliar, PECS stands for Picture Exchange Communication System, and is simply a little binder with pictures attached by Velcro to it which allows him to make requests for items/activities by tearing off a picture and handing it to the person asking the question.  We have attempted this method, or variations of with him at different times in his development and learning, but it just wasn't happening consistently for him. He simply wasn't ready, or wasn't exposed to the concept often enough to realize that this could be beneficial to him in terms of getting his basic needs met.   However, now he is more ready, he has access to the book/method all day at school, and it is much more easily carried over at home as a result of the fact that I am not the one trying to implement it 90% of the time, but only trying to reinforce it. . In fact, I'm still not great at using the book consistently because I just know what he wants and forget to require him ask, but it's been a learning process for all of us, and I'm getting better at letting go a little bit, and not worrying that he will starve to death if I don't just shove milk and bites of macaroni and cheese in his face at our specified meal times.  Instead, I will show him the book, ask him what (if anything) he would like, and I don't (always)  feel bad in not offering him something if he doesn't make the request.  If he can use this requesting skill with other people in other environments, he can do it with me too.  He needs to learn that things won't always be handed to him with no effort on his part.   In fact, this is perhaps one of the greatest things I have taken from this entire situation of changing schools and having a different routine.....giving him independence, and creating new and different expectations for him.  I am only now realizing that Nicholas is not incapable of many of the things that we have been struggling with for so long (like getting him to drink from something other than an infant's bottle.) but that I have not been expecting enough of him.  

His behaviors, or lack therof,  while some legitimately limited or affected by his cerebral palsy and/or autism, are also influenced by the way I and others treat him.  And others treat him based on what the expert, in  his case, his mommy, tell them he is capable of. After all, I, until now, have been around him more than anyone on any given day, and should know him better than most.   Everyone else has had him for snip its of his days, or his weeks, and by no fault of their own, have been very respectful of what I, his mother, have had to say in terms of what he can/cannot or will/will not do.  And they should be...I know him best!  But, in the end, Autistic behavior is not my area of expertise. That is a lot of pressure on me, when it really comes down to it. For the first time I'm realizing that I play a major role on his development, or lacktherof,  and one that I am not qualified to play in many ways.   I am still a mommy, not a therapist.   It has become very clear to me over the past few months that I am not pushing him hard enough. I am not letting him learn to do things on his own.  And let me tell ya, this kid is SMART and likely PREFERS it this way.  Who wouldn't??? Wouldn't YOU like someone to spoon feed you while you browse Pinterest or ESPN to begin your day?? I wouldn't mind.....just sayin'....

 Now, I am not implying that I am failing him as a mother in any way.  We all live and learn. And there is a unique complexity to the situation because he is unable to express himself in a verbal way in which I can understand him, therefore making it difficult to decipher when I am being stern and motherly vs. being cruel.  However, when my two year old says she doesn't want to take a bite of her food until she gets a cookie, I don't just let her have the cookie because she says she wants it.  She may be persistent, and put up a fight, maybe even throw an all out tantrum.  But eventually, she knows that she has to do what mommy says because I am teaching her about discipline and expectation, not because I am being cruel to her by making her eat a piece of chicken.  

However, because of  Nicholas' sensory and other physical issues, take eating just as one small example, I have often not pushed him to, hold his own spoon, or drink from a sippy cup, or try a new texture when he puts up a fight, or eat a few bites  of food first without getting to play with his Ipad during the meal.  Why?  Because I felt like I was being mean or unfair to him.  But guess what I've figured out recently? This kid is smarter than the average bear, and is very capable of learning how to do all of these things.   But recently, I've grown a little and decided to push myself to push him. Don't get me wrong...it's very difficult for me at times, and probably somewhere along the line, I've pushed too hard, or pushed at the wrong time, or haven't pushed enough.  But don't we all do that as parents at some point or another? Autism or not??  I guess the point is that yes, while he has legitimate limitations, I am starting to learn that I am not doing him any favors by catering to all of them all of the time.  Part of this liberating thought process change for me has come about because he now has professionals working with him all day on the things that have been too emotionally charged for me (like potentially starving my child, or forcing him to do things he isn't physically capable of...so I thought.)  Another part is that he is, in fact, getting older, and as I see my daughter's maturity  level begin to unfold at the young age of 2 1/2, I finally have a real relative comparison of which to compare Nicholas' potential at now age 4 1/2.  

 The result of this realization?  Nicholas is now very capable (still with some difficulty due to legitimate motor planning issues) to eat his own meals with a spoon. While we are not 100% successful 100% of the time with this new found skill (after all, it takes practice to make perfect.) But now that he knows that eating on his own is expected of him (MOST of the time...disclaimer for when we are in a hurry or having a rough moment) his efforts to do so have improved drastically.   He is also drinking from a sippy cup, albeit it has to be the exact same sippy cup each time (sensory, sensory, sensory) but dammit, it's better than an Evenflow Comfi-Grip bottle that shatters every time he drops one on our tile kitchen floor! (Don't get me started...I should have bought stock in the company four years ago...I think I've kept them in business until now.  But I digress....)  He has begun to initiate requesting milk or food using his PECS book because I don't automatically offer these things to him when I assume he must want it or be ready for it. Not always, but as often as I can remember to do so, I offer instead, his PECS book to give him the opportunity to ask me for what he wants. I give him an opportunity for his own independence.  This is largely in part because I know he is capable of this at school, so why shouldn't he be exhibiting this same skill at home??  

Overall, I don't believe that the new school setting is some kind of miracle setting for him.On the contrary, I never did believe it would be.  But I will say that it is living up to my expectations in terms of giving him the repetition and time he requires in order to learn important life skills, and it is also giving me the empowerment to feel strong enough reinforce these things when he is home with me.  It has been a win-win for us so far, and I'm thrilled for him to begin again full time in the fall (though, he has not really stopped, and is in school this summer three half days a week) to continue to work on these skills.  It has really been a blessing for us, and he is coming such a long way.  He only had a short 6 weeks in the new classroom environment before the school year ended for the summer, and I can't wait to see what happens after an entire year of opportunites in this setting beginning this September. 

As for the rest of the family, Avery is potty training, and Brody is training to be  a future linebacker for some pro football team...or something like that.  They are growing like weeds, both individually, and together as siblings. Both of them have developed such distinct personalities, and are also really beginning to notice and pay attention to their big brother (and vice-versa.)  I have really enjoyed watching them develop over the past few months, and at many points in the past,  as I have shared in my blog,  I have felt trepidation that their lives would be negatively impacted by the time and effort that I put forth with Nicholas and all of his special needs...fear that this would somehow take away from their well-being.  However, they are now showing me signs of something I had never considered....that they will help me look out for him as well, and perhaps even be positively influenced by their big brother.    Example: DVD in car stops playing, I am driving, Nicholas begins whining. I have no idea why.   Avery then informs me that "Nicholas wants Yo Gabba Gabba and it went away!"  Hmmm, the DVD stopped.  Good to know!   Thanks Little Pea! (as I lovingly refer to her.)  Often times, she seemingly speaks for him when she informs me that "Nicky wants oatmeal momma!" when I know that he, in fact, does want some breakfast and therfore is making his noises to let me know.  And even Brody, as an 18 month old who is seriously so fearless and gives me mild heart attacks daily with his physical feats around the house (like climbing onto the kitchen island by scaling the less than sturdy stools that sit upon my not so soft tile floors)  will hear Nicholas make his noises,  and attempt to bring him his sippy cup of milk, or his Ipad as if he knows that it will calm him.  They are learning a way of communicating without using words, and it's as if it is  instinctive for them. They are learning compassion already, at such a young age.  Somehow, it's just normal for them, and it is so heart warming to see them begin to interact with their brother, who, by the way, is beginning to tolerate them in his space a bit more.  It goes both ways. 

Yes, the past few months have been a little crazy with new schedules, new activities, new routines,  and I have been focused on many things and nothing all at the same time (this will be another post!) but our new journey is well underway.   All of my babies are growing, and in many ways, so am I as a mommy.  I will try and do a better job of writing, not only because I hope to help others with my story, but because my sharing helps me as well. 

And as a closing note, I missed my own blog's first birthday back in May, but I wanted to thank you all for my over 7400 page views, and my over 160 Facebook followers! I know many of you have read, shared, or followed me over the course of the past year, and the support is so much appreciated!  Thanks for reading, and please pass my posts along if you ever feel they could be beneficial to someone you know!

Until next time.....