The Magical Play

As a special needs parent, sometimes you get to participate in things that other parents might not get the opportunity to attend. Its one of the perks of the job, so to speak. Today was one of those days, and it. was. AWESOME. 

At first, I was quite anxious about the whole affair. The notice came home from school about a week ago announcing that the entire school was going on a field trip to the high school to watch the musical that high school kids had prepared for the community. 

Field trips always make me nervous. Sometimes, though rarely, they turn out okay. But sometimes I end up rushing off to pick up a screaming child who'd just had enough of the whole affair and now was adrift in their overwhelmed and solitary life raft that everyone who's ever heard anything about autism has seen or heard about. When the child can't handle and shuts everyone and everything out. That. That's not what I wanted for the girls today. 

Last night, I got a call from the school asking if I'd attend the play with the girls to ensure their success. Hesitant, I agreed. 

Why was I hesitant? Well, we call the girls "our Yin and Yang" for a reason. That reason is, what tends to help one cope, causes distress in the other. Its a fine line when you have to do one thing to help them both. Maggie generally benefits from my presence at school functions. Winnie gets instantly distressed when she sees me outside the bounds of her "normal". In Winnie's normal, I only go to school to pick her up. If I leave without her, I am gone. Where did I go? What I am doing? Will I be home later? Will I come back for her? Will I be there for her? This is a short list of possible things that she may be thinking (I really don't know for sure) - but I do know that the uncertainty in what follows my visit to a school outside of her normal, is too much uncertainty for her to bare. In the past, every time I've visited school I've had to take her with me when I leave. The ONLY time she lets me leave without her is the Christmas concert for school. 

After a long talk with Winnie, she let me know that she was not okay with me going to school, but she would try her best to not see me there. Her opinion was, if she didn't see me, I wasn't there - and if she didn't see me, it would be okay. 

That was a pretty excellent plan. We went with that. 

So at the high school, I waited, and Winnie's class walked by - no one noticed me, so it was still a pretty decent plan. Maggie's class came in and I stepped up to Maggie and we walked together to where her class was gathering. Maggie sat down, and I looked up - straight into the eyes of Winnie, who was sitting about 5 rows next to us, but facing us on the floor. It was unavoidable. 

And then it started... her face got red and she teared up and started to shake. I got up and walked quietly over to speak to her "teacher helper". Together, we helped Winnie work through her anxiety at having seen me - reassuring her that there were fun things at school and that I'd be home to play with her after school. It seemed like forever for her to calm down, but she did amazing. She even asked her teacher if she could sit with Maggie and I. 

It was nice to watch the girls faces as they discovered a live play - the actors, the singing and dancing, the costumes and the energy of the auditorium kept their eyes wide and on the edge of their seats! 

And then it was over, and they'd sat through the whole thing! Then I got kisses as they went back with their teachers, and Winnie's teacher helper tried to help her stay calm even though I was leaving - quietly reminding her of all we'd talked about before show. 

As the girls separated back to their lines to get on the bus, I shuffled out of the school as fast as I could - ripping the metaphorical band-aid off and didn't look back. Partly because I wanted them to adjust as fast as they could to the fact that I wasn't there - and partly because I didn't want to see Winnie's face - red and stressed and tear-filled. She can do it - and if she can't - they'll call. That was my mantra as I walked the long walk to the car, and the long drive to the highway. She can do it. They'll call. 

My amazing girls, who overcome every day, went to a play, and went back to school - like superstars!

Also, the play is "The Wizard of Oz" performed by OHS this week - its a great play if you have an evening free! The OHS students do a fantastic job and all of the kids enjoyed themselves - even mine!

A light through the stress..

Today was a shockingly good day... aside from the fact that I skipped class. It was a bad thing, its true, but it was good for my sanity. You see, I'm still going through things that my mom left... and by things I mean everything... I'm moving furniture, washing clothes, boxing things, donating things, crying, discovering and repacking everything that my mom owned.

My mom died on the 8th of November... She was my rock and she babied me completely. So much so that I actually moved back in with her so I could help her do things like open unruly pickle bottles and she could help me raise my two autistic children.

While we're still sorting through the reams and reams of paperwork, and piles and piles of things that were hers, I find I'm unable to focus on schoolwork - which is unfortunate considering I was trying to take Probability and Statistics for Engineers and Computer Scientists... Its sort of important to attend the lectures, and now I'm mostly lost.

But I feel lost in more than that. I'm lost in just about everything and the only way I can shake off the horrible feeling is to keep busy... and so I clean, or poke at my family tree and history books. I generally like video games, but I haven't been on them hardly at all since she passed. There seems to be just too much other stuff to do.

Back on the original subject of today - the girls did great! I let Maggie pick out some new recipes to try and we went down to the grocery store to pick up some ingredients that we didn't have. They picked out a few extra things as well (Some pop, a bit of candy, some fruit etc..) and they did amazing the entire time. They only got tired and wandered the tiniest little bit, but never too far. After we got all the groceries piled into the car, I took them to KFC for at reat, and they even helped me take the groceries in when we got home.

I'm shocked and pleased. My heart is full and I'm heartsore too... I wish my mom was here to see them do so well.

But for now, I'll take it minute by minute and relish in the fantastic moments or hours like we had today, thanking the Lord and the angel that is my mother for helping us through our lives.

The Waiting Room

Yesterday was kind of miraculous.

The past few days we've been insanely busy getting ready for school. And with Mommy going back to school this fall as well - things have been more insane than usual. Yesterday was a day when I had to get a lot of things done for Maggie to head back to school. One of the things was getting her hair cut (which was amazing and she was wonderful during). The other incredibly important thing was to have her prescription filled for her Biphenten. It helps her remain calm, keep focus and slows down her impulse reactions so that she can think them through slightly before making a choice.

I picked up the bottle to call in the refill and groaned. There were no refills. Thinking back as to how this could have happened, I groaned again. I got a call a few weeks ago from the pediatrician’s office saying that our before school checkup was postponed because the doctor was taking a vacation. That was fine except that we all forgot about the refill.

In a slight panic, I called the doctor’s office - no one was there. I called my family doctor - also on vacation. I called the pharmacy to see if there was anything that could be done and their response notched my panic that much higher - “Go to the emergency room and ask them to write a prescription for you”.

If anyone has been to a Canadian emergency room in the last little while, they can relate to the possible hours you may have to wait to be seen, the crowded waiting room, the many noises and the dreaded order of admission - you get seen based on your immediate need. Someone with a more serious issue gets in before you do. I was thinking that a prescription was the bottom of the rung. At this point though, I was out of options. So, I packed up my mom purse with books, tablet and things for drawing pictures before taking Maggie and heading to the emergency room. I assumed they’d want to at least see who the prescription was for, since the ER can’t generally dole out things without having a record of seeing the patient.

We went in and explained the situation and the girl at the desk patiently took all of our information. When I laughed that we were having a heck of a day, she smiled and said she was too, but seemed in a lighter mood. She assured me that I’d done the right thing by coming in and was really kind to Maggie when she gave her the admittance bracelet.

Maggie continued to be amazing as we sat and waited our turn. We read a book and watched a bit of the TV with Maggie quietly asking questions and wiggling in her seat. Before long, they called Maggie’s name and we were off to see the nurse. It was so nice to round the corner and see another friendly face. She sat Maggie down, looked at her chart and started to take Maggie’s vitals as required - answering all of Maggie’s curious questions along the way “What is that for? Why doesn't she have a thing to hear hearts around her neck?” and even sat still when she was getting her temperature taken in her ear! I was completely amazed and so very proud. I was still on edge though because we weren't on the home stretch yet… still more waiting to do!

But this is the part that blew my mind… and the reason I was so impressed as to take the time to write this… The nurse looked at Maggie a moment and then quietly asked me “Is she Autistic?”. I raised my brows in surprise and admitted that she was. It was surprising, because I’ve never had anyone ask me before. When I answered, she nodded and smiled and quietly rocked my world “Well, we won’t send her back to the waiting room. You can wait in this quiet room here.” She put us in a small blue examination room by ourselves to wait for the doctor. It was pretty much rocked my entire world and I am still smiling. That little kindness went a long way. A looong way. The “waiting” in “Waiting room” for everyone else means “Waiting for the Doctor to see you.” but for us it means “Waiting for the inevitable meltdown.”.

Inside the blue room, Maggie was distracted by the new surroundings. She had lots to look at it, and when she was done looking, we drew pictures. By the time the doctor came in to hand me a prescription with a jovial “Betcha need this for the start of school eh? I've been in the same boat before - have a good weekend!”, Maggie was still pleasantly occupied and still quite happy.

The thoughtfulness of the ER nurse may seem like a small boon, but it had a huge impact on our day. It could have gone downhill so fast, but her seemingly small concession saved our outing - and my sanity!

One long day...

Today was hard... it was the hardest day in a long time. I have visible battle wounds that I haven't seen the likes of since before Winnie was diagnosed. And it all went down at school, during the busy and visible lunch hour.

It started out not badly - Maggie did fantastic at skating. She listened so well and was simply amazing, handling everything so well. But shortly after she went back to school, she quickly ran out of steam. Her ability to cope with something bothering her, or something she wanted, fell apart.

Just after I returned home, the phone rang. Expecting to hear the voice of Maggie's teacher or the school secretary, I was surprised to hear the familiar voice of the principal instead. Very quietly, but hurriedly, she relayed the condensed version of events, and could I come and get Maggie immediately.

After I got Maggie home and calm, I could piece out the full story of what happened, but the condensed version was – Maggie punched a girl in the face, lost her lunch time outdoor play, freaked out and was currently throwing pint-sized chairs around her kindergarten room.

When I arrived at school 15 minutes later, Maggie had calmed slightly. That gain was totally lost when she saw me and realized she was going home. 4 adults, a bloody face and hand later, I drove a screaming, crying, kicking 5 year old home from school. The heartbreaking part? She was screaming to go back to school the entire ride home. All she wanted in that moment was for me to turn the car around and take her back to school, and promised me the world to make it happen. And I wanted to. Of course, I couldn't. But I wanted to.

After getting Maggie wrestled into the seat and buckled, I spoke with the resources teacher about the situation, passing it back and forth between ourselves the possible reasoning for the outburst. So far as we can tell, Maggie is under the weather, possibly from allergies that we have her scheduled to be tested for. Unfortunately, she's not even scheduled to go to the pediatrician  who orders the allergy testing, until the 25th.  I asked the resource teacher if Maggie should be pulled from school until then, and she scoffed at the idea. By the way her behaviors are escalating, the 25th just seems too far away.

On the way home, I managed to pry some sob-filled and broken answers from Maggie to fill in the pieces of what happened this afternoon.

The children were lined up for something, and a little girl in Maggie's class was in line next to her. The girl got a little rambunctious and bumped into Maggie a few times in line. Maggie couldn't take this bumping and, after tapping her a few times to no avail, she punched the girl directly in the face causing her to need an ice pack  As a consequence for punching the girl, Maggie lost her outside time at lunch. Aaand the meltdown ensued. In her mind, the girl should have been reprimanded and not her. However, she seemed somewhat contrite when I reminded her that she forgot the “Tell the teacher” step in her logical process, and that she's not allowed to lay hands on another person.

Tonight, I'm not breathing easy. My hope for tomorrow is that when I call the pediatrician  I can get Maggie in sooner, and that Maggie has love and calm for her classmates on Valentine's day. We may have lost this battle, but the war still rages.

The lunch dilemma.

Winnie is the "Star of the week" at school this week - which means that she gets to do something special every day. Today is "The special lunch" - she gets to have a special lunch (brought in by a parent) with a special person or parent. Originally, she wanted to have lunch with me, and I said okay. Today though, she remembered something...

Every time I go to school with her, she wants to come home with me. Even though she knows she can't, its like a compulsion that she can't control, and it upsets her so much she starts to cry.

Its why, when there is something special that parents usually go to (aside from Christmas concert, because she doesn't get to interact with me, just wave as the class goes by), I don't attend. Skating? No. Field trips? No. Swimming at the pool? No. I *want* to be there, but we've discovered that its just better for her if I don't go.

So today, her face went white as she remembered the likelihood of an uncontrollable meltdown. Her solution, because she still wanted McDonald's, was for me just to give in and take her home. My solution did not involve that. Instead I'm sending her two Happy Meals, dropping them off at the office and she can pick a special classmate to have lunch with instead. When I asked her if she liked that plan, she calmly and quietly agreed. Then looked me in the eyes and said "But Momma, I still love you, okay?"

And that, ladies and gentlemen, was huge. And that's enough for me.

Daisies in the Walkway

Today was a rough day for both girls - its the day after Daylight Savings. Where the rest of the world is an hour earlier than their little bodies are. Maggie's internal clock went off today right on time, and she roused me awake an hour earlier than she needed to be. Confused and getting angry with me, I finally conceded and got up to feed her breakfast an hour earlier than normal, taking everything as slow as possible so as to not upset her morning routine more than necessary.

Winnie tried her best to stay in bed, but just couldn't, and followed us out to the kitchen shortly after.

The rest of getting ready went much the same, slow paced, but something a little "off" and I knew they'd be fighting the whole day to keep it together, and by the end of the day they'd have had it - their bodies having given up an hour earlier than school let out.

At 2:30, when the bus backed into my driveway and the doors squeaked open, the driver's face told all as she turned to me to impart that they'd both had a rough ride. She wasn't sure what was wrong, but they had a hard time getting either child to get on the bus at all.

Both girls quickly bounded off the bus, although their movements let me know they were certainly exhausted. Winnie flopped on the grass and waited for me to clear the bus steps, then lept at me, clinging to me and growling like a little beast - I hugged her tight and held her too me as Maggie loudly began her neverending speech about anything and everything - a trait she has to try to keep under control all day at school. I looked down at Maggie and nodded as she spoke, then whispered to Winnie, asking her what animal she might be pretending to be. Normally when she was upset or had an angry emotion, an animal is what she turns herself into - prowling and growling with gnashing teeth and extended claws. Usually asking her about the animal she's portraying calms her and gives her something else to think about - Not this time. She ignored me a few times, and then growled out that she wasn't an animal, she was just a Winnie, and an angry Winnie.

My heart sank. I wouldn't be able to help today like I usually do. I wouldn't be able to snap her out of this as before. It was a rough day, and it wasn't over yet.

After some prodding, Maggie let me know that she was just tired and cranky, and Winnie had a new "teacher helper" that didn't do what she'd expected. And anything that doesn't go as expected, is pretty catastrophic in her day. She can tolerate someone new usually, she's learning to cope with that - but working all day and not getting the expected result, she pretty much flew off the handle.

Winnie's greatest desire at this moment was to go to the Dollarstore - and Maggie just needed to be alone.

We went to the Dollarstore, while Maggie stayed home with Grandma to try to calm down. Winnie and I also ended up getting some chicken nugget supper at A&W (a big step from the days when it was only McDonald's that was acceptable.). As she sat there reciting an entire episode from a Netflix documentary about reptiles, I was reminded of when this was all she said. Doing this, repeating, reciting, being lost, was all she did.

My heart ached and I wanted to cry. I sat in this public place, looking at my child with love and affection, nodding as she spoke as though I was listening, and all the while, my heart was breaking. We've come so far, and yet, days like this can set it all back. Days like this make me realize that although she can hide it, she will always be autistic. She will never be cured, she will only learn to cope. Just like everyone, she will have hard days where her defenses and guards and coping skills will be lost to her, and she'll be lost to us.

Maggie is the same, in her own way - her defiances are her own way to keep order in her world. When she's struggling hardest, is when she is most defiant.

Some days we glide through, always conscious of the hurtles and the issues - but some days are like a shower in ice water and I struggle just to breathe. And then we get through it, and they smile at me again, the far away look gone from their eyes. A moment of clarity that makes all the difference and almost erases the bad day. Some days Autism is like the meter maid that's fining you for getting back to your car late. You're mildly annoyed. Some days, Autism is like the Repo Man who puts the lock on your house - you're overwhelmed and devastated  And some days, Autism is just that funny quirk that your child has that makes you smile - the screen that their personality shines through like a happy daisy creeping through the stones in an elaborate walkway.

Somedays. Someday. Today. I'm glad its over.

Winnie and Maggie ended the day splendidly and seem no worse for the wear, just tired. It was a hard one, but something we've overcome before, and will do again. I'm happy that days like today are fewer and farther between than in the past. :) 

Maggie Starts Kindergarten!

Its been a good while since I've posted anything other than various kid quotes or quick situations on my facebook page. If you've been reading those, I'm glad you've enjoyed them. My lack of posts certainly hasn't been due to lack of things to say, but rather, the time to say them properly. This last little while has been hard. Lots of changes throwing the girls for  loops and my exhaustion level so high that I really didn't feel like writing.

But today, is the start of something new. Today is Maggie's first day of public school. My little kindergartener shuffled off with excited hops, bobs and random squeals to her first day of being "a big girl". Months of prep, for her to be ready to go, and for the school to be ready to recieve and accomodate her needs, are put to the ultimate test today.

The school has had two years to get used to Winnie's nuances, and they were excited at the prospect of Maggie joining the ranks. Putting them on their guard was an interesting task - because with Maggie and Winnie, the old saying familiar to those in the autism field comes into play... "if you've met one child with autism, you've met ONE child with autism." - because Maggie is completely the opposite. Everything they used to deal with and help Winnie in her learning, will in no way be applicable to how they help Maggie learn and adapt to the school environment. Although they've been cautioned, warned and educated on this - today, they'll see it first hand.

I remember when the girls were babies and imagining what it would be like when they went to school. I remember dreaming that I wave as they got on the bus and sat down, then slumped back to bed with a smile to catch some extra hours of much needed sleep. I could never have imagined that I'd have to hold hand so tightly so that my kids wouldn't bolt in excitement as the bus arrived, or hop on the bus to buckle my rambuncious 5 year old, unable to sit still on her own, into a 5 point harness in the front seat, or that I'd sit here, on pins and needles waiting for the phone to ring, praying that everything goes well and they come home safely.

As Maggie smiled up at me, and Winnie did her best to coddle her little sister on her new adventure, and show her all the things that she enjoyed about the bus, I burst with pride. Look at them go! They're so amazing! They've come so far!

I drove to the school after setting them on the bus, just to reassure myself that everything went smoothly and the school was prepared. Its days like this, the big days that are big for everyone, that I tend to be more glad that my kids are special. Not that all kids aren't special, but my kids have "the label" that no one wants to give. I like that people understand that my kids may not "get" what's going on - they may need things explicitly explained, they need an extra eye to make sure they don't wander and they just need... more. Because they need more, I need more. I like knowing all the people involved in their day. I like that they know me. I like when they explain things, and I love when they ask questions.

And, oddly enough, I like that my kids are special together - that they understand one another and, although they can sometimes use this knowledge to annoy eachother, they can also use it to comfort and help. As Maggie hopped into the school, always in direct contact with her EA, happy and bubbly - and Winnie, reassuring me that all would be fine as I waved them inside on their first full day together in school - I breathed a sigh of relief that the day started well. I need this breath before the edge of anxiety creeps back up to claw at me as I wait to hear how their day went.

I've done all I can to prepare everyone. I have confidence that all will be well, but anxiety over the actual outcome. But I know, they need this. They can do this. I can do this. Just Breathe.