Gratitude and Letting Go of Needing The Answers

So whatever I did, apparently worked.  Maybe?  Maybe he heard me?  Maybe he just decided that he was going to have a good day.

After my tantrum, where I felt insane, I sent my son to school.  I spent some time getting rid of my upset.  I breathed, I tapped, I did a bit of yoga, I imagined the best possible outcome.

He took his TCAP, and when I picked him up from school, he said he’d had the best day ever.

He proudly told me that he was one of the first ones to get his test done.  Which almost made me gasp, “Um, hon, did you try your best, or did you just guess?”  He told me that he did his best.  I hugged him and told him that’s all I ask!  I asked him how his breathing was, and he said that he coughed a little bit, but it was no big deal.  No bullying, only playing with friends.  It was a sparkly, wonderful day!

Just the day before EVERYTHING was a big deal, which was why I kept him home.  He was wheezing and he slept for about four hours on Monday.  Maybe it was just daylight savings and he needed more sleep, maybe it was seasonal allergies, maybe it was the test.

I’m not sure how he did it, but he turned it all around.  He seemed happy and confident and all was well.

I’ll take it and I don’t need all the answers.

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The Preemptive Tantrum Attack

This morning was emotionally rough, at least for me.  I did get up early and take care of myself first.  I went and got the clean laundry upstairs, so that everyone could get dressed without asking me where anything was.  Yay!

I presented it as fact that my oldest was going to school today.  He tried to tell me he’s sick like he did yesterday, and I simply gave him medicine for his cough and said he’s going to school.  I finally talked to his therapist last night, and she very nicely told me that I’m coddling him and to send him to school.

I do agree that he was avoiding the test, and avoiding the bullies at school, but I’m annoyed that he doesn’t have the tools to cope with them.  And basically, I feel like everyone’s telling me that all I can do is push him out into the world so he’ll learn how to cope.  I’ve been doing that for years now, and I end up with a sad, anxious kid to cope with.  Thanks y’all.

I really did try to prepare my oldest to go to school, try to review the coping strategies he can use to get through his test.  But he really didn’t want to listen.  When I finally got him to come and sit at the table and talk to me, his little brother decided that it was time to run around the table and play with the dog.  (He’s part tornado, did I mention that?)

Once I kicked the 8 year old upstairs to brush his teeth and finish getting ready, the 10 year old, whom I’m trying to help, is sitting at the table crinkling the wrapper of his snack.  Crunch, crinkle, crinkle, crunch, crunch.

Gone….too much…one crunch too many….I lost it.  And, while I didn’t scream, I did snatch the granola bar from him and make a noise that indicated pretty well, that Mom had a very loose grip on sanity.  I almost calmly said, “Talk over!  You don’t want to talk.  Go brush your teeth!  Go find your shoes!  Get. Out. Of. My. Kitchen.”

His brother helped him find his shoes, he went to school, and he didn’t throw even one tantrum.  He couldn’t, because I had one for him.  

There wasn’t enough room for TWO tantrums in that kitchen.  My tantrum was quiet and I tried not to cry on the turkey sandwich I was making for lunch.  But I think I was clear that I was the crazier of the two, and he backed down.  Standardized test is far less scary than crazy mama.

Interesting technique.  Preemptive tantrum used as tantrum prevention.  Yeah, I meant for that to happen, I planned it that way.

Oh, Yeah, It’s Monday, All Right

Switching to Daylight Savings Time can feel really hard.  It affects my kids, especially.  I tried to get them to bed a bit early last night.  To no avail.  They mostly stayed up too late, trying to fall asleep.

This morning was a bit rough.

I woke up with a sinus headache that made my world spin sickeningly, but I’ve learned.  I took care of myself first, drank a bit of coffee to cure my spiritual woes (Ahhhh!) and ate some food to allow me to take some ibuprofen.

First, my son’s pants were too tight.  I made a point to be sure that everybody had clothes for today, I thought I put 3 pairs of pants in his dresser.  He wore one pair to a party yesterday, and this morning there was only 1 pair clean.  At least 5 pairs of jeans are clean, but talk about a meltdown trigger….let’s not talk about the jeans.  shhhh!

After he quit screaming, I told him that I had a bad headache and that if he screams I would not help him.  I discovered that these pants have the elastic sizers in them.  I unbuttoned them and he said they might be okay.

Then I went to the bathroom and took a moment to calm myself down.  I went downstairs to find that my while my youngest was fine and eating breakfast, my oldest was wheezing on the couch and holding his chest.  He had already had a hit from his rescue inhaler, and I got him to take his QVAR inhaler.  I also found him an Alavert because that seems to help.

Then I realized that we played at a park with all the kids at the end of the party yesterday, and though there was still snow on the ground, there were primroses blooming.  Joy!  Apparently spring allergy season has started.

I think the asthma attack is real, but then there’s also the TCAP issue.  This is a state mandated test, today is reading, one of his hardest subjects.  I’ve talked to the school, I’ve seen the work he can do, but he feels that he’s “too dumb to take the test.”  So now, I’m not sure if the asthma is anxiety, or if it’s allergies.

I talked to him about how to just get through the test.  I talked to him about if he just gets overwhelmed, he can go to the nurse’s office and they’ll call me.

Last night, I thought I had him convinced to go to school and at least try.  But then this morning he doesn’t want to go.  So, here he is at home with me.  Mostly happy, and coughing just a little bit.  I’ve called his therapist to see if she can talk to him and give me some tips in helping him cope.

I wish I knew the right answer.  I don’t want to teach him that it’s okay to quit.  I also don’t want to put him into situations where he feels overly anxious and stupid.  It’s not good for him either.

Shifting of Perspective

My realization recently, is that my son’s diagnosis helps me adjust my perspective.  I’m not stressing as much when he’s “not normal,” it’s not as upsetting that he needs extra help.  I’m focusing on how grateful I am that he functions so well.

We went to a crazy restaurant Friday night.  It’s an all-you-can-eat Italian place.  There aren’t long lines to look at all the food, there’s stations, with different types of foods, and piles of plates, you just dive in and serve yourself what you want.  There are big, fake trees throughout, with tables underneath.  Tables all crowded in close, and people, people, people everywhere!  It was loud and chaotic.  

This was NOT a place for my blind husband!  Normally at a buffet, we could go through the line together and he could tell me what he wants, and hold the extra plate.  Not here!  I mean, I had difficulty navigating it all.  So he was in charge of guarding the table and I guessed at picking out food for him.  At one point, I realized I had forgotten to get spoons for the tiramisu, and I noticed that there were spoons just across the aisle from us.  I stood up at the table, and simply stood there and waited for the traffic to die down.  It was like crossing a highway! 

Both of my kids LOVED IT!  I’m so excited by this!  Because I know there are so many ASD kids who would not cope with this environment.  The noise, the lights, the crowd, and unfamiliar food to boot!  But mine did great.  

The only thing he was a little nervous about was getting a dessert crepe, and there was a line for that station.  So I went and stood in line with him and discussed the choices.  I warned him that there could be bananas and strawberry sauce (bananas literally can make him throw up, and he just thinks strawberries are gross) and explained that he didn’t have to choose those things.  I read the sign to him so he knew his choices; he’s reading better, but this was all in cursive.  Before he even got to the head of the line, he said, “It’s okay, Mom, I’m good!”  And he proudly came back to the table with his crepe with caramel, chocolate, and vanilla sauce on top, and creme in the middle.

Sometimes I feel like he’s almost a different kid in public.

Both kids happily explored the restaurant and I’m so proud that both of them can behave in public AND be polite.  I really am blessed.

 

Bless you! Bless you! Bless you!

I love my kids’ elementary school, I deeply dislike the bureaucracy of a public school.  I’ve been there a lot, volunteering over the last five years, my face is known there.  The paraprofessional (a para is basically peon who is paid to do what needs to be done at the school, help the kids, make phone calls, do officey stuff) just called me to remind me that my son’s IEP is today.  She’s one of my favorites and we always chat.

She says, “I know you already know, but the IEP is today.”  Yep, yay!  With a new IEP, changes can be implemented.  But not until I sign the plan, so no changes for today.  Heck, not even any changes by next week.  I said, “T, does my kiddo have TCAP testing today?”  And she said, “Yes, I was working with him yesterday.”  And I said, “You are the absolutely perfect person to talk to then!” with joy in my voice.

He came home yesterday after dealing with this standardized test and said, “This was my worst day ever!  I want to DIE!”  This is unacceptable.  It was all because I signed off on an accommodation on his current IEP that says that he is allowed extra time on all testing.  Because of it, his class got cookies and recess and he stayed in the whole time feeling like a prisoner, doing this f*&$ng test that doesn’t help him at all.  Oh hell no!

She and I had an informal chat about the best ways to help him.  I told her that he has my permission to take a break from the test or or completely walk away.  She explained that if he doesn’t finish the test, he gets a zero and the school gets a zero.  It’s all about the funding.  And I smiled and said, “Well, he gets a zero if I keep him out of school, too.”

Luckily, she and I see eye to eye and we’re in complete agreement about the effectiveness of this testing model.  We’ll see how the principal and his teacher take it when I say the same thing.  😀  Joy!  T told me that getting an exemption from this state mandated test practically requires an act of god.  That doesn’t frighten me.

T is WONDERFUL and I am blessed that she’s the one who made the call!  She said she wasn’t working with my son today, but she’d go let the other paras know some of the coping techniques I shared with her.

UPDATE:  I just spoke with the doctor’s office.  If nothing else, she’ll write a note excusing him from school!

I Am Blessed With Friendly Contrast

Which, truthfully, is a much nicer way of saying, “Whoo-hee! Wow, I’m glad that’s not my life.”  I know that sometimes, my friends are saying the same thing about my life.  “So glad that’s your problem and not mine!”  We all provide each other contrast.  “See?  My life isn’t so bad.”

It’s not schadenfreude, there’s no joy of “Ha, ha!  Your life really sucks and mine is great.”  It really a feeling of thankfulness that I don’t have to walk that road.  Contrast is my friend.  It tells me, “I don’t want that!”  So that I can decide what it is that I do want and then feel gratitude for it.

When my son was diagnosed with PDD-NOS, I was really relieved to get a diagnosis.  Yes, hearing that my child has something incurable can feel devastating, IF I let myself go there.  I’ve touched it, felt it, but it’s not something to wallow in.  The last hope of “He’ll grow out of it” has died.  I’ve been living with him for ten years now, and I’ve known that he’s different.  I’m just happy that finally a doctor has confirmed that my son is different and now finally the insurance will pay for therapy.  The label doesn’t really matter to me.  The label is simply a way to afford the therapies he so obviously needs.

I was encouraged to check out circleofmoms.com because of the numerous support forums for Asperger’s and PDD.  I’ve checked it out and had some fun answering posts and asking for help.  A lot of what I found there was stories that provided contrast that tells me that my life is wonderful and blessed.

I’m so thankful that my husband is patient, doesn’t scream at me or the kids or, worse, hit anyone.  I’m so thankful that my child uses the toilet on his own.  I’m so thankful that my son wants to be social and that he can maintain his emotions well enough that his meltdowns only happen at home.  I’m so thankful that we have insurance and that we’re covered under HIMAT.  I’m so thankful that my husband still has a good paying job that provides that insurance.  I’m thankful for a school who is responsive to my son’s needs and that he’s able to be in a mainstream classroom.  There is so much I’m thankful for.  The list goes on.

I spent the morning talking to a friend about her challenges with her son, who is undiagnosed with anything, and she’s not seeking a diagnosis, though she admits that, yeah, she’s thinking probably Asberger’s.  She’s a single mom, and has no insurance, so therapy isn’t something she can afford anyway.  She has pulled her son out of school because he was miserable and he’s suddenly a much happier person, actually social and more able to cope.  Now, on her own, she’s trying to figure out how to homeschool him and cope with his anxiety symptoms.  If it were anyone else I’d be terrified that she would end up isolated and crazy, never leaving the house, but her life doesn’t allow that, so her son just comes with her.  I can offer support but I can’t fix it, like us all she’s doing what she can with what she has.  Don’t know that he is autistic.  Autism isn’t something that is cured, it’s something that you cope with and I think she’s going to do her best.

Just talking and listening to her really puts it in perspective that my problems are miniscule and laughable.  My boys are some of the few kids he’s even willing to play with that are close to his age so we’ll be getting together soon.

I’m going to see my best friend tonight, even though it’ll be rush hour and she’s practically in BFA  (just as far as BFE, but Aurora not Egypt, so more cops and drug deals.)  She’s sick, again, and moving in three weeks.  I was going to go help her pack Friday night, but now it sounds like we’re getting 8″ of snow tomorrow night, so I don’t think I want to go get snowed in.  (It’s in the 60’s today.  God, I love Colorado!  Good job!)  I’m hoping to make her sit still and just pack her kitchen while we chat.

We have a mutual contrast thing going on.  She’s thankful she doesn’t cope will all the BS here at my house, I’m thankful for my health, and still have moments of strong enviousness of her solitude.  There are moments where living alone with my cats sounds really good!

Anyway, she’s lost her voice again, and she pointed out that she really has some sympathy for her parents’ Corgi.  They adopted a Champion show dog and spent a bunch of money doing so, just so they could retire him.  They did it because they were offended by the cruelty of the fact that he had been de-barked.  So my best friend has been temporarily been debarked.  The realization of the morning is that honestly, she’s pretty Corgi-like already.  Blonde, full-sized, but short legs, extremely smart and loyal, with a wicked bite.  lolololol

Contrast is there all around us.  May it be friendly contrast and may you appreciate it and cherish it and use it as your ally.

Arf.  Image

Seeking Support (and the right app for that)

Wow, this is the week of support group meetings.

Last Sat. my NT son & I went to the Sibling Clubhouse at the Autism Community Store in south Denver.  It was awesome & I really hope it is something that my kiddo looks forward to every month.  I wish it were closer.

Tonight we’re going to the Family Pizza Night autism support group at Beau Jo’s Pizza.  The kids are excited that we’re eating out on a Wednesday.  Whoo-hoo!

Then Saturday we’re going to an National Federation of the Blind support group for my husband, who has a degenerative eye disease called Retinitis Pigmentosa.  We’re hoping to talk to a few totally blind iOS users for some tips.

We just bought two iPad minis with our tax refund.  One for our son with PDD-NOS and one for my hubby.  So now I’m fully immersed in appland.  This is my first journey into tablets.  I didn’t realize how many keyboard shortcuts I use until I had no keyboard to work with.  AIIIIIGHGHGHGHGH!

I’m trying hard to set up the iPad for the kiddo with USEFUL yet engaging apps that will support what he’s trying to get through at school.  On my own, as we haven’t started therapy yet, so I’m the head researcher.   And at the same time, I have to keep him from getting access to the iTunes store and Netflix.  lol  And my credit card.

While I set up the one iPad, listening to the background noise of NT sib feeling cranky that HE didn’t get an iPad,  my legally blind husband needs some help setting up HIS iPad.  Didja know that voiceover and zoom in accessibility change all the frickin controls???  Omg f!@*^&$ three finger tap and rotate, what???  Tap each letter three times just to type?

In the meantime, I’m waiting to hear back from the Doctor about the Fragile X tests that we’re waiting on.  The IEP meeting is this Friday.  And my best friend is packing up her apartment to move to a house and desperately wants my help.

Hmmm…and no one has done the dishes for some reason.  Good thing we’re eating pizza tonight!

Sometimes I’m sad and overwhelmed by all this.  Sometimes I’m incredibly frustrated and angry as I deal with my son’s idiosyncrasies.  Sometimes I’m just amazed that I seem to still be holding it all together.

UPDATE:  Wow cool!   I just found a support group just for me 😀  And it involves yoga at the same time.  Life is good.