Has Anything Changed?

You know, sometimes re-reading journal and blog entries is depressing.  Especially if you skim and miss the good moments hidden amidst the more constant “I’m tired today, or so-and-so is having this problem;” and I think “Nothing Changes!”   I get comments from well meaning moms in places like church that say things like “this too shall pass” or, “It won’t be long, and they’ll grow out of it” or “enjoy it while you can, they’ll soon be gone.”.  It’s often all I can do to bite my tongue and be civil- after all, they’re just trying to cheer me up.

So I decided to see if- just maybe- anything has changed.   First, I think I found something to agree with the schools about (shock  🙂 ) — the end of the school year is the best time to evaluate where you are at from last year, how much has been learned and what needs to come next.  So in light of that, I decided t look back at my blogs from one year ago and see what would be worth an anniversary memory- so to speak.  I used the post “Little Victories,” from May 2012 as my reference….

>First paragraph, last year—— “Well- another sleepless night.  But as I lay there reviewing in my mind the last pieces of this school year. I found myself thinking about how my day pretty much revolves around moving from kid need to kid need- trying not to forget the easy kids thru the fog of relentless issues till I drop in bed- only to lay there worrying about them in the same sort of cycle.  It has gotten to the point that I have to have a movie on to sleep to, so that I can keep myself from worrying … or thinking about what needs to be done tomorrow….”

*****This year—-Some things just don’t change.  Still move from kid to kid- in fact I’m getting pretty good at it, and once in a while it just seems like normal life instead of a fog.   And I still need a movie to sleep to; same movie in fact.  Some rare days I actually sleep, but most days I wake when the oldest does, altho he can’t figure out how I hear the bathroom door shut.  Fatigue has become relentless.  I rely on the Lord pretty heavily to get me thru, and I know he doesn’t let me down, even when I don’t know how I made it to the end of the day.

>Next line “Then I suddenly felt impressed that I should take the time to balance the worries with an equally careful list of blessings and victories….. “

****Well, I  am very grateful for that piece of inspiration, that one thing has kept me going many times all year!  And I think I will keep that theme as my backbone in this post and my site in general.  It’s a power that moves me forward when nothing else can.

>Last year—“– my TeaRose and Young Women’s Stake Volleyball.   This one was a huge victory…  1- conquering fear…like many HF Autistic kids, fear is monumental for her, but she not only played, even after being hit in the face with the ball- she served! and she tried sets and bumps almost as often as the other girls.      2- the other victory is the team’s… I loved watching those girls. They filled in for her (and each other, for that matter.) never got mad at lost balls, and loved each other thru thick and thin. Amazing true charity.  Thanks.

May 2012- YW group

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May 2013 YW volleyball days

*****This year– same true charity from our Young Women’s group… some things I’m grateful haven’t changed.   Some changes were good- TeaRose did really well in serving, her deep concentrating abilities served her very well.  And she even tried to bump and set a little, and was seldom the reason for missed balls.  The other girls are getting good at moving around her struggles and distractions, and lots of them take the time to light up with joy when they see her, and say hi.  It does a mommy good to see this.  It helps to balance the things that have not changed… School is still hard, and just like last year, her minimal 504 only helped till spring, then all the AIMS (standardized tests) and the teachers trying to prep their classes to move forward a grade– and suddenly its a nightly decompression crying hour and a struggle to keep going.  This year for the very first time, she is talking about the possibility that an F is an acceptable solution to the problem.  Hurts the heart.  But back to good news,  little sister got to join the fun in volleyball this year!  My baby is turning 12! — I don’t have tiny little children anymore.  I’m not really sad- I’ve needed to move forward for a long time.

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May 2013- Big sis in the older group, Little sis in her first game with the younger girls!

Last Year—-“Brand was very nervous a week and a half ago.    He wasn’t brave enough to ask anyone to the big, multi-stake Prom till the last moment possible.  But I’m so glad he did, and glad she didn’t  have a date yet (which is why he had the courage to ask her)  That was a huge step for him- one that his big brother has not even wanted to try yet….  The evening was a huge success! “

******This year— Last year’s success produced good fall-out all year- he has been spending almost every other Friday at a movie night party with a nice group of friends he found thru this young woman and seminary friends.  So, Guess what!  he asked another date! early this time, and followed my rule to pick someone new for his second date (I didn’t really expect it to be a whole year apart, but he’s such a good kid to remember such things)  🙂 We are gearing up and excited!  Brand has done a lot of growing this year;  more than height, (which is now 6’2″) but in the maturity to let me push him to keep going in school, even when his brain is in shut-down.  He lets me talk him out of meltdowns most of the time, and is finding the words to tell me what is the heart of the problem.  Way huge.  It led to a Neurologist appointment for him too- and a discovery that he has been dealing with migraines like his big brother, just not classic, so they were harder to spot.  Hoping we have got a good handle on that from catching it earlier than his brother, and starting with a good doctor instead of the pile we had to sift thru with Ryan.  Not really different than last year on the outside, but much more hopeful.

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Asking a girl out- Shining Armor style

>Last Year– Then last week,  Mark worked all evening on helping Ryan fix his computer problem….It was a nasty problem, and miserable to fix, but Mark held his tongue, (a huge Asperger victory)  and was blessed with the outcome that Ryan started talking to him.

***** This year– Well, the one who has been doing the most growing in this house, I’d say hands down, is my awesome Hubby!  In fact, I’d say he has come to the point that he has a handle on his emotions better than a large percent of the NT men in the world.  He has had to, ’cause he cares and does not want to hurt.  He has also learned how to fix car radiators, house air conditioning things, plumbing, and his biggest thing has been learning people skills… He comes home from work and tells me how he held his tongue or was positive or held his ground but without anger, or many sundry things–  I am very proud of the great man his is becoming by his mountainous efforts.   But Ryan has been growing too… he doesn’t like me to talk about him.  It’s been slow, and reverses are hard to bear, and we have not found our way out of the migraine hole, but we have found a good doctor we respect, and that helps. He is better at listening, and he has found some fun science lectures on you-tube and has begun showing a spark of enjoying learning again.  I am very quietly excited about that one.

>Last year--4th-  is my SuperDK’s turn.

School field day- early fall 2012

This has been a hard year for him.  He  has the problem that he is so smart, that it is hard for people around him to really believe he is Autistic (as opposed to just behaving badly) …till something happens and his great brain lets him down, and he is suddenly Very autistic, taking teachers and siblings by surprise.  But he has more love in him than anyone I’ve ever met, and finds it a joy to be my helper in the home.— And just this weekend, he and his Dad discovered a mutual love for Nancy Drew style computer mystery games… And DK is GOOD at them!  They had so much fun camping out together on that thing.  I truley believe it is a long-term victory for anyone to find a talent they are good at, but especially for someone who is struggling with a self image problem from poor grades like him and others like him.

***This year– Well, I’d say this year was a victory for the IEP team as well as for DK…I finally found a school that had a very good group of people.  They could see what I could see, and they worked with me to get the right goals and a school that could provide them.  I was concerned about him taking the spec. bus to Jr. High- but no one in the neighborhood has bugged him about it, so that fear has not materialized, fortunately.  And for the first time since 3rd grade I have had him coming home and telling me what he has learned today, and moving forward.  That teacher deserves more cudos than she knows, because he has told me where in the brain it hurts to manipulate math (just like my oldest boy)  and she has got him to move against that struggle!  Yesterday he begged me to come watch their volcanoes explode.  I was the only mom (7th graders on a normal spectrum suddenly think it’s not cool to have mom around) but it was really good for me– I watched DK with his other Spec. classmates, and realized that even tho’ he may have a good handle on vocabulary, he was actually in a good fit– The goal of the class is to get the kids (all boys) ready to move into mainstream classes; it has been a good growing year for him- he might even be ready for it next year, in 8th grade.

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>Last year–  I would be very remiss to not include our sweet Kydee.

inventing things...

Inventions 2012

Kydee is not just the youngest in our home- she is often the glue.  She has the ability to climb into the lap, so to speak, of any of her ASD siblings and calm their melt-downs.   I teach all my kids that everyone is born with talents and with hard things to over-come, to make them strong; and I sometimes get asked what her hard thing is— but it’s an easy answer that they can see, because she gets headaches every day.  We are still trying to find the answers for that one.  But in the mean time, she and I have fun being study-buddies, curling up on the bed and watching NOVA when she needs a break from the pressures of being loved so much.  :)

*****This year– Even Kydee  moved schools this year.  She wanted to learn Violin and take AP classes; something that the charter could not offer.  So we enrolled her in the local public school.  I got her summer violin lessons so that she would not start behind, and she loved excelling in that talent.  I think that will become a stress release for her as she grows up.  She also loved competing in the spelling bee, (3rd place of the whole, huge school) and got close enough to be proud of herself, but I was rather glad not to add regionals to my pile of stuff to do, I hope that’s not selfish.  Anyway, she loved having a school all to herself, no siblings– it gives her the escape she needs… doing better on headaches,  and we still love NOVA.

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Birthday time– turning 12!

>Last year—Well- counting blessings did help.  I feel calm and so back to my normal self.  And even tho this took much of the night, and the first birds are chirping at the dawn outside, I think I am ready to face the day, and  be Mom again.

*****This year— I can almost picture the Lord looking over my shoulder and saying- “Well, what about you?– Have you changed this year?”

Well, this has been one of my hardest years, all four of my school age kids moved up a school.  And that has meant helping them all with grasping and handling new schedules, new rules, and new social expectations and personalities. And for me that has also meant very little time… even this post took all week to sneak in the bits of personal moments to finish it.

And also pushing the limits of my shy struggles in the almost constant meeting new counselors, teachers,  parents of peers, and tons of new doctors too.  In fact I now have more specialty-doctors’ phone numbers in my phone than personal friend’s numbers. You know, I read once- some months ago- that Moms of ASD kiddies can show symptoms of Battle Fatigue (PTSD) and that actually helped me.  It was like a light turned on; having a possible name, and the thought of not being the only one who felt this way, has given me a handle to grasp and shift the load to an easier position t carry.  I still felt like I was drowning for quite a while, and things like my memory is still suffering for it… but I have felt myself coming up for air a time or two in the last few weeks.  In those moments, I feel tall and strong- and myself.   I can enjoy the moments of joy much better.  And in those moments I can think clearly enough to see that I have learned much, I have a been gifted with a great well of experiences and now I can share with others- and that sharing helps me feel closer to breathing too.

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So yes, tho I can’t say that I am anywhere near out of the water yet- I know from whence my help has come….and I think that I am swimming in the right direction.

Categories: LDS Mom of Autism, Midnight musings | 3 Comments

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3 thoughts on “Has Anything Changed?

  1. zPolarBear

    And the Love and Respect of your family toward you has grown (changed 🙂
    …yes, even your Mother respects and understands a bit more now I believe…(your Dad always did 🙂

  2. Carey Moore

    I have returned to this blog entry several times over the last two days, using it as a tool to reflect on my own family’s growth over the last year. It’s hard to see the changes when you’re in the trenches, just trying to get through to the next day. Thank you for inspiring me to see the small joys I sometimes miss.

    • So Loved hearing from you Carey- I’m glad I could be of any small help at all. Keep a small victories journal- it has helped me more than you could possibly imagine.

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