Thursday, May 19, 2016

Pace, Interrupted

I'm sure you all at one time have been frustrated by having to slow down in order to actually accomplish something, instead of speeding up. This is often true of our special needs kids. And while we know this in our head, it can be frustrating when we don't totally embrace their speed of learning. But this is one of the reasons we homeschool, right? So why do we expect them to go at a 'normal' (which probably could be read as 'public school') pace?

The last few months have given me some insight into how my Aspie daughter actually FEELS when life gets so big for her she MUST slow down.  Allow me to explain.

When my daughter is faced with a FULL production week: at least three 3-4 hour dress rehearsals followed by 2-4 performances over a six day span, more often than not, I do not require, nor do I expect, her to make it to church that Sunday. Someone once said to me, "Well, what time does the last show get over on Saturday?" as if it was that one show that was throwing her. I explained it wasn't just the one show, it was having to be ON all week. And again, I knew this intellectually but I didn't really get a feel for it on a cellular level until I was in a show of my own. That's when my pace, and my perception of my daughter's pace, was interrupted.

A few months back I auditioned for and was cast in a community theatre production. I have been in theatre productions before but the last one was several years ago. I enjoyed the weekly rehearsals and the camaraderie our cast had. Tech Week (aka Production Week) was literally three 4 hour dress rehearsals followed by three days of performances. Saturday was the longest day by far because it was an earlier show AND we were required to strike set and help clean up afterwards. Our shows averaged about 2.5 hours each time. So my Saturday looked like this:

Noon Call Time ( the time you have to get there to prepare: get costumed, makeup on, mic check, etc)
    I arrived around 11am, which means I ate 'lunch' around 10:30am.

2pm Curtain call

4:30pm Show ends
              Greet guests
              Turn in microphone, change into civilian clothes
               Help strike set and clean up
6pm      Leave to go join rest of cast at restaurant to finally EAT.

So, basically my Saturday was 7 straight hours on my feet, more or less,
   after a full week. Oh, and I should mention, I'm a very 'last minute' type of person, so that
   Monday I decided I would make gifts for each member of the cast. I worked on those while not at
   rehearsal.

By Sunday, I was toast. But I still went to church. Not sure why, because during Sunday School I couldn't pay attention and during service, I took a nap in the car. I was SO tired, physically and mentally. And I don't have Aspergers. I now have a fair, yet very small glimpse, into what my daughter experiences during extreme times such as this.

My other 'ah-ha' moment occurred this week. Because I'm a glutton for punishment, or just addicted to learning, I am taking a couple of free, yet intensive classes on coursera.org  One of these classes is Calculus. No, I don't want to take Calculus, and no, I'm not good at advanced math. It is simply a stepping stone to another course I want to take.  So as I stumble along in this course, I realize I am not going to meet the assignment and quiz deadlines.  Thankfully, this class let's you turn the deadlines off. When I went to do that, it reminds me that most students do much better when deadlines are set and met. I agree. But I also had to admit that I could not meet the pace those deadlines would require of me. I had to admit to myself that I would and could still work on the course material, it would just take me a little longer than the rest. And that's okay.

Have you ever worried that your special kiddo isn't going to 'graduate on time'? Ever fretted he/she wouldn't finish a subject 'on time'? I have. But you know what? Ask yourself this: is your child taking this course, using that curriculum, to 'finish on time' or to actually LEARN the material?

Most of us homeschool our special needs kiddos partly, if not wholly, so they CAN learn. Not so they can meet a slate of cookie cutter deadlines.

Tuesday, February 16, 2016

When will I learn?

There is a Scripture verse in which the writer states when he was a child, he acted as a child; now that he is grown, he has left childish ways behind him.  (1 Corinthians 13:11) Today I'm wondering if I will ever get out of thinking like a child. What I mean by that is, while I am now a mom and have been for over seventeen years, I still don't "feel old enough" to be one and I'm certainly at a loss when it comes to what I call my daughter's Autism Days. Those are the days when absolutely nothing is going right in her world, and most likely won't, until the day is over and done with. It's like her specially wired brain short-circuits on those days and I don't know how to flip the switch or even know where the fuse box is!

This past weekend was a busy one; especially for my not disordered but differently ordered child. Sunday was a trip with her dad to the Arabian Horse Show. Monday was President's Day so Dad was not at work but at home and Monday afternoon was theatre class. Oh, and Monday was the first day of THAT time of the month for her. None of the first three things would be too much of a difference on their own but all three combined plus the fourth - I just think I should have seen this coming.
And yet, the part that still wants to 'fit in' with the world (be on someone else's timetable for accomplished work) pushed the academics today. Did that go well? I think you already know the answer to that.

I get frustrated because we're behind. At least, according to the standard (public school) schedule. But are my kids really behind? They know how to wash dishes, clean laundry, sweep and mop the floors. They know how to carry on an intelligible conversation with adults. They know how to read and write. They both know Jesus! That trumps everything.

So, where am I going with this spiel? To remind myself, and hopefully encourage others, that these days exist. Even if it's been weeks, maybe even months, since an Autism Day has showed up in all it's ugly-side glory!(note: I'm not saying Autism is all ugly. It's not. It just has its days.) These days will show up. So why am I surprised by them? I don't know.

What I do know is this: we are, ALL OF US, fearfully and wonderfully made (Psalm 139).
God is not surprised by anything we go through. And He can handle all our anxiety, even from our Aspie kids! 1 Peter 5:7

May YOU be encouraged that you are not alone in any of this!  Isaiah 40:31

-Noble

Tuesday, December 15, 2015

DECEMBER TRIFECTA

      So many of us with special needs kiddos know the holidays, any of them with a change in routine and extra stimuli, can wreak havoc on our children's emotional status quo. Our house is no exception.
This past Sunday was the December Trifecta at our house. And I was at work.

      The run down:
     It was my daughter's first day of that time of the month. That alone is enough to derail her usually stable executive functioning (ability to deal with every day life). Thus, the first part of the trifecta.

     The second part occurred when people (boys and girls) from her own youth group started to make fun of special needs folks. She handled it amazingly well when she explained to them how she is one of those folks. However, despite the fact that she pretty calmly explained it, and they were surprised that she was a part of the special needs community, one of them still had the audacity to tell her, "Don't get all booty hurt about it." Seriously? This is how a youth group peer treats another?

      The third part happened, as I said, while I was at work. The rest of the family was at home and as instructions were given to do something, the tectonic plates shifted and the core inside my house evidently erupted into lava - lots of yelling, anger, confusion, you name it.

      It's hard enough for my girl to deal with Aspergers on a day to day basis. Then you top it off with people who refuse to accept you as you are, think you're too sensitive, and won't listen to you when you try to explain what's going on. Honestly, I'm surprised she exploded. Usually, she implodes at times like this. But based on what was happening, had happened, during the day, I'm really not surprised it happened. I'm just sorry that it happened. Or am I?

     I know that some of you deal with some very similar issues, if not the exact same dynamics. My hope and prayer is that we all learn from these experiences and help our kids learn from them, too. But more than just learning from them, I pray we can figure out how to help others who don't deal with this on a daily basis to understand this is OUR normal. And just because my normal looks different than yours doesn't mean it's not acceptable.

     We see so many advertisements, hashtags, etc, asking for awareness of this, that, and the other. I'm pretty sure we're all AWARE of different challenges people have. Let's you and I break the mold and speak ACCEPTANCE of the differences in life's routines and challenges that special needs brings. And may we all teach each other how not to be hurtful but to be HELPFUL.

     Merry Christmas, everyone! If you live with these challenges, don't let anyone make you feel bad for not attending their event. You know what you need to do for the mental health of your family. If you don't live with these challenges, don't be insulted because someone says they can't participate in your shindig. It has nothing to do with you. What DOES have to do with ALL of us is LOVE! Matthew 22:39

-Noble

Wednesday, September 16, 2015

Black and White OR Red All Over!

While reading through some of my past blog posts, specifically one from 2012, I came across the reminder that our instructions to our children with Aspergers need to be black and white. Crystal clear. You'd think, after five years of knowing this is what's going on, and knowing I need to be extra clear on this, I'd give black and white instructions. And yet, I failed once more. Recently.

A couple of months back, my daughter was invited to spend the day on the lake with a youth group. She'd never done that before but was excited. As I've mentioned before, the water is her home. We made sure she had snacks, sunblock, the obligatory ratty clothes. I picked out the perfect shirt for her to take with her, thinking she would wear it over her swim suit while in the lake. What I neglected to do was tell her what I expected. So, you guessed it, she didn't wear it. And while she did have sunblock on and even put some on later, if you have ever spent all day in, on, or around a lake, even with sunblock, without a t-shirt, you FRY. She fried. And had the chills that night. And was tired the next day.

I hadn't planned on her going to church the next day, even though it was Sunday. That is something I learned awhile ago in this journey - ONE event per weekend and church counts as an event for the Aspie mind. So not only was she obviously in recovery mode, she had to deal with a sunburn on top of it. Well, experience is the best teacher and she won't soon be forgetting that lesson! Within a week we had bought her an actual swim shirt and  she was thrilled. Found them at Costco and they had ONE in her size! I know that was God! The slowness in timing was mine, not His. His timing is always perfect; mine, not so much.

In all of this we learn, again, to be crystal clear in the instructions we give to our amazing Aspie children. We also learn that while we wonder if they will ever survive out in "the real world", away from Mom's and Dad's protection, we have these little tastes of how they'll react to similar experiences. Best they have those FIRST experiences and "oops" within the safety of a loving family
where they can be guided and talked through what follows. And that, my lovely parents, is quite an honor!

Monday, September 14, 2015

It seems my ability to be consistent in blogging is nonexistent. So there's that.
However, it doesn't mean I don't live with the highlights and lowlights (peaks and valleys?) of Aspergers every day.

This weekend the Aspie princess is on a beach trip with her youth group. This is a GOOD thing. My girl feels at home in and near the water, so the ocean is a good place for her to be. Do I worry? Not really. Water, even the ocean, really is her friend.

New this year for her is swimming with the local high school's swim team. She willingly goes to a a gruelling swim practice four days a week. Another first for this year is actual competitive swim meets. She's been swimming with a recreational swim team every summer for the past five or so summers. This fall she does actual timed events and uses the diving block.

About that first swim meet . . .
We did prepare her for it by talking about the noise, stimuli, etc. We forgot to talk about the confusion  that might occur, at the exact time of the event, that might send her into a tailspin. And it did. She imploded and ran off to face the fence, cry, breathe . . .

And she came through it. Yes, we endured stares of other adults who didn't get it. Other teens who didn't get it. But you know what? I ignored them. I helped her. And when it was time for her to swim again, even though she was the last swimmer to come in, some of her swim team members cheered her in, and even some of the competitor team's members cheered for her! Yep, I cried. Tears come to my eyes even now, thinking about it.

So, do I worry about her at the Ocean? No. God has her and watches over her when I can't. I know He watches over her always. As He does you and me. He has given us unique and special children. Kids that would change our lives in ways we never thought possible. And for the better!

May you be encouraged, Mom and Dad, as you do your best each day to raise these unique kids. Is it easy? No. But is it a blessing? Absolutely! Consider yourself chosen - not everyone has the wherewithal to raise such interesting people!

-Noble

Thursday, April 17, 2014

Time

It's been over a YEAR since I've posted here! I am so sorry! And I have no good reason to give you. Here this blog is supposed to help all of you as you traverse this strange trail called Aspergers and I've been MIA.

Since I last posted, I know the DSM (the manual that categorizes psychological disorders et al.) has removed the diagnosis (dx) of Aspergers and just lumped it into the Autism category. Autism is such a wide spectrum, though, isn't it? One person can say, "My child has autism" and they could mean anything from non-verbal to has what looks like two-year-old meltdowns even though they're fifteen!

I don't know about you but my journey on this trail has made me much more aware of how people are really doing than how I perceive they might be doing. For example, I've noticed more that when cashiers look mad and distant at the store, they're usually just not feeling well. Or if my son, who is gifted (and that's a whole other set of issues, right there!) says he cannot do something (such as a school assignment right that moment) he literally might not be able to even though I might think he can!

This school year my daughter has started her freshman year of high school. What I've learned since the beginning is she's not as independent at her work as I think she should be, she may not graduate in the expected four year time frame, and while she does have a mind for science, her high school level biology course is taking a lot out of her. Not only that but there are gaps missing in her math, so we will probably be backing her up a bit in that.

Now, if I were to be worrying about mankind's opinion about all this, I would probably stress myself out even more than I was earlier this year  (2014)when I landed in the Emergency Room more than once due to stress! However, I remind myself it really doesn't matter what anyone else thinks. I need to do what's right by my daughter. If we've identified some gaps in her education, we can back up and get her to where she needs to be before moving on. THAT's what is important! That and letting her know, daily, that her parents love her, and most importantly, GOD loves her!

Time is fleeting, the Bible says, and we've all seen the truth of that! Regardless of what anyone else, who isn't traversing the journey you're on, thinks, you the concerned and involved parent, need to follow your gut and get the services and/or diagnoses you believe your child needs, whether she is 4 or 24.  We do our kids no favors by trying to get them to "keep up with their peers" when they just aren't ready. Use your time wisely, moms and dads! Your kiddos will most likely only be with you for a little while longer before life happens and you wonder why your house is so quiet! (I'm not there yet, either, but I keep hearing that's what happens!)

Peace and blessings to you!

-Noble

Monday, August 6, 2012

Forgive me?

How are you? Have you been having a good summer? Great summer? Terrible summer?
I've been thinking for awhile that I need to visit here and update the blog. I had NO idea that
I hadn't been here since April! So, I ask your forgiveness.

Yep, if I were you, I might roll my eyes, too, or think, "You know she's going to do this again",
etc. And you're both justified and correct. However, remember this blog is not really about you or
me but about facing and dealing with the challenges of Asperger's Syndrome. So please don't let
my faults keep you away from occasional good information!

Speaking of forgiveness, do you sometimes find it difficult to forgive the Aspie in your life? When the Aspie in your life has a meltdown do you ever think (and I know you do!), "Again? Why can't they CONTROL it? What is it THIS time?" Or the Aspie in your life does something that you think they should KNOW not to do? And then when it's pointed out that their action was wrong, they either shrug or don't do anything, including saying they're sorry. Annoying, isn't it?

Remember, Asperger's Syndrome is a different order, a different wiring of the brain, not necessarily a disorder. So, the answers to the above questions are: yes, again. No, he/she probably cannot control the meltdown. They may not even know what caused it. And one of the best explanations I heard as to why they don't say they're sorry:

     "If they did it on accident and you know it was an accident, why should they have to say they're sorry?
      If they did it on purpose, then they're not sorry, so why should they have to say they're sorry?"

Most of us know that it's polite to say you're sorry. The Aspie in your life may not yet know that or may simply need reminding. Or it may never make sense to them and they won't ever say they're sorry. We must be forgiving. Don't fault your Aspie for the different wiring of his/her brain. God has a plan for him/her using just the brain he gave him/her. And the result of that plan may very well surprise you!

As for those of us who are neurotypical (aka, erroneously, normal), perhaps the Aspie in our life will some day see fit to forgive us for our difficulty in accepting someone whose brain is wired differently!