Archive | special needs RSS feed for this section

Why I keep trying

19 Aug

We’re out of food – a common experience when you live with teenagers and they keep inviting friends over.  It’s a near-daily experience.  But the food levels in our house have become a bit tragically low, even for us.

So yesterday, I decided I should go buy lots of food.  I keep saying I will then never do because of this or that, but yesterday, I thought it could be different.  That plan went south when I said out loud “I’m going to go food shopping.”

“Shopping?” Maura piped up, sudden eagerness in her voice.  She looked down at her feet.  “Oh!  Shoes!”


“Okay Maura, go find your shoes….”

She spent a good five minutes being way dramatic about finding shoes – or not being able to find shoes because despite the shoe rack in the entry, and the shoe rack in the closet, and the mats for shoes by the door, and the space for shoes I made in her own closet – we can never find shoes.  (Though to be honest, yesterday, I couldn’t find one of my shoes either.  It’s been a long summer.)  So I asked a teen to help find shoes for their sister.

You know, it’s amazing how quickly they find stuff when it means I’ll take Maura with me…hmm…

My “Great Stock Up on Everything” plan turned into “Run to Target, grab some laundry detergent and enough food to get us through the evening” plan, as I was already regretting taking Maura with me before even getting out the door.

We got to Target, and glanced at the videos.  I’d had hoped to find a copy of “Aladdin” (didn’t) and Maura ooo’ed and ahh’ed over all the brightly labeled choices while I cringed.  I wasn’t sure we’d make it out of the aisle without a scene. She began to say “I can’t…I can’t…” which is her way of saying “I can’t make a choice, there’s too many options, I’m overwhelmed, I don’t know what I want, I’ll probably have a huge meltdown soon…”

But somehow…we got out of the aisle without a scene.  Easily.  I said “Let’s keep looking.” and she said “Okay!”  She did nab a Frozen sticker book on the way, in an attempt to get “something” – I said “Hey, let’s look at it first…oh…it’s stickers…” – Maura doesn’t care for stickers – “Let’s look at the coloring books instead.” I suggested as I put the book back.


Well, that was easy.

We looked at coloring books, which got a big “No.” from her.  However, the next aisle had composition books, and the girl loves those things and plucked a bright pink one off the shelf.  I okayed it – anything to keep her away from my paper.

After a brief stop in the laundry detergent aisle, we ended up in the school supply section – Maura has a thing for paper and pens, she will go around with notebooks and pens and scribble all day, so this all made sense.  She glanced over everything, but I could tell that the busyness of the section was beginning to get to her.  She became less cooperative.  I tried steering her towards something and she yelled “No!” and ran.  This was my cue to get her out of the section.

And then, we turned a corner.

And there were ALL the backpacks.

All the girly, pink and purple, princessy, sparkly, girl powery backpacks.

I watched Maura glance at them all and suddenly, her eyes got wide and she gasped.


It was a Frozen backpack.

A Frozen backpack that lights up.

A pink and purple Frozen backpack with sparkly sides that lights up.

She wrestled her own personal Holy Grail off the rack and hugged it.  I glanced at the price, and breathed a sigh of relief.  On sale for $14.99?  Done deal.

We raced through the food section with the happy girl pointing out every time that backpack blinked (as long as it’s moving, the lights twinkle…even sitting in the cart, it was twinkling) as I grabbed snacks and cereal and corn dogs.  We negotiated over “orange” juice (some weird veggie juice blend) and got apple juice instead.  I also steered her away from the “fruit and veggie” orange colored popsicles and pointed to the regular popsicles below.  Yes, I steered my child away from the “healthier” choices.  She eats cherry tomatoes like candy and grapes until she’ll burst, we’ll be fine.

She then happily bypassed the clothing section – a first – so we could check out.

I noticed then that she got nervous in line. I looked at her and said “Don’t worry, we’re still getting the backpack!” and she suddenly smiled.  Yes, I can add “mind reader” to my resume now.  She then handed me the backpack, did a happy dance, I put it on the belt as she jumped up and down in sheer total excitement, I chatted with her about how she could be happy, but maybe not this loudly. The nice man scanned it, put it in the bag for her, and handed her the bag.  She instantly cheered and “Woohoo!”ed, and the woman in the next lane smiled and agreed that the backpack was fantastic.  The nice cashier man even loaded up the cart while I tried to contain Her Most Excitedness, who was still hopping about laughing.

There was one moment, where I thought “Wow, this is still not age appropriate for her” and wondered about her being 30 and hopping about with happiness over a doll or backpack.  But then I was all “She’s happy, anyone who doesn’t like it can shove it…” and went on with life.

But we weren’t done.  No, Maura spotted the restroom sign and did her potty dance (she only does this when there’s an audience…sigh…).  There I am, with a cart of stuff, and she wants to use the restroom.  Then she spots Starbucks and wants to go to Starbucks as well.  So I say “Let’s put our stuff in the car, then come back inside, go potty and go to Starbucks.”



I give the line again on our way out – first car, then potty, then Starbucks.  She’s happily cooperative.  She got it.  She understood, and helped me put stuff in the car without batting an eye.

So we went back in, went potty, then Starbucks.

When we got back in the car, she asked, “Home?”

Yes, we’re going home.

We’re going home after the most successful outing in recent memory.  No meltdown, no staring from others, no crying from either of us.  Sure, we had corn dogs and popcorn for dinner.  The teenagers didn’t mind one bit.  But this is why, even though it doesn’t always go this smoothly, I keep taking her places.  Because she can do it.  We can get through this.  We’ll have our bad times, but we’ll have our awesome times as well.  And hopefully, with practice, we’ll end up with more awesome times than not.  Case in point – the first day of swimming lessons, she cried when I changed her after the lesson was over, but we pushed through it.  The next one, she fussed slightly then was fine.  Last week?  No fuss.

We can do this.  Sure, the next outing may contain a meltdown, but we will get through it.

And by the way, Maura slept with her new backpack, then woke me up bright and early to show me her new backpack, and is now wearing the new backpack.  Because it is the Best Thing Ever to Have Been Purchased at Target Ever.

Best. Thing. Ever.

Best. Thing. Ever.



About these ads

Words and meds and more words

12 Aug

This has been the Summer of the Seizure Meds – or “The Great Weaning Experiment”.

After her latest EEG showed no seizure activity, we went ahead with attempting to wean Maura off the seizure medication she’s been on since December of 2007.

When she started on the seizure meds, I noticed that her balanced improved greatly and she started speaking more.  Now that we’re weaning her off them – I’m noticing she’s talking more again.

Funny how that works.

We’re down to 2 mls twice a day, which is probably less than what she originally started on all those years ago.  Last night, as she chattered away, giggling and laughing and being so very “on”, my husband joked “Can we put her back on the meds, just to chill her out a little?”  Because holy cow!  Usually at night, she’s tired.  These days, she’s wide awake.  (Of course, that could be because she’s being allowed to sleep in every morning.  The girl is not a morning person, never has been.)   And the words are coming out more.  Oh, she’s not suddenly “normal” – she’s not bursting with newfound maturity to a degree.  She’s still Maura.  But the words – the songs. She’s singing along with songs much more.  And speaking lines from movies (not in an echolalia way, just along with them) – needless to say, if I say “He’s a llama!” she can say “He’s supposed to be DEAD!” – yes, “The Emperor’s New Groove”, why do we even HAVE that lever? Also, singing along with all of “Let It Go” and My Little Pony songs I didn’t even know she knew.

Knock on wood, but I think it’s going well.

She’s still a bit of a squirrel, still has her opinions and tantrums, but we also have more words.  More words in a row. It’s a gift that I’ll take.

she can't really read yet...but she loves books just the same.

she can’t really read yet…but she loves books just the same.


Oh, and Maura decided that she wanted her hair cut.  Why yes, I immediately jumped on that before she did it herself, lol!  We’re back to a bob, and she loves the feel of it on her shoulders.


Happy with her haircut


Responding to my own post – regarding “Staring”

9 Aug

Yesterday I wrote about dealing with the rubberneckers of life when Maura’s having a loud, public meltdown.

I’ll admit, I was a bit surprised by a few of the comments.

Yes, there were those going “Ignore them!” (I tend to) and “BTDT”, to which I salute you, fellow parents living the dream.  But then there were others who tried to explain why they look upon us.

I get to a degree, why people look.  I mean, if a child starts shrieking as if set on fire, it is totally natural to turn your head and see if the child is actually on fire.  Once you assure yourself they aren’t on fire, really, it’s time to move on.

Some of you promised, you’re not really gaping – and I do believe you.  These are the reasons for looking at the screaming child left in my blog comments -

Wondering if the child’s in pain.

I can tell you that when Maura’s having a meltdown, she’s not in pain.  When you have a child who doesn’t communicate well verbally, you actually become quite tuned into their cries and attitudes.  Maura has a fake cry (and I’ll say “Wow that’s fake” and she’ll laugh), a mad cry, an upset cry, a sad cry, and actually gets really quiet when in real pain.  If it’s a knee scrape, she will cry, but not to the degree of a hungry/tired meltdown.

If she is hurt, I can also assure you that I wouldn’t be marching her sternly towards a time out.  No, I’d be kneeling down, giving hugs, pulling band aids out, doing something lovingly maternal to try to fix the problem.

Seeing if the screaming child is a student of theirs.

Well, that’s a new one.  I have almost never run into Maura’s teachers in public, even when we lived in the very small town in Michigan.  Let me tell you, if I did spot one of her teachers in public during a meltdown, I’d be all “OMG LOOK, it’s Miss So and So!” to try to break the spell of the tantrum.  And knowing Maura’s teachers in the past, and even now, most would probably be over there in a heartbeat to help out.  Because they’ve all been fabulous like that.  So teachers, aides, therapists – you have my permission to help run interference if you see a student out with their parent giving their parent a hard time.  The parent may just hug you for it.

Making sure there’s no abuse happening.

This one kind of bothered me.  That for some reason, my child may be screaming because of abuse.  It also makes my life even more stressful because I know those types are out there, judging my every action, seeing if I’m abusing the poor screaming child.  So I have to be cautious about every move I make because there are so many levels of what people consider abuse.  Me holding her by the upper arm as I walk her out of the mall may seem abusive to someone else, even though I’m holding her like that to A) make sure she doesn’t dart off out the door and possibly into traffic and B) because my oldest child had Nursemaid’s Elbow so if you held him by the hand and he tried to yank away, he’d actually pull his elbow out of the socket.  We found this out one time at church.  And another time at a McDonald’s ball pit.  Luckily, he outgrew it.  Our the pediatrician suggested the upper arm hold verses holding the hand when escorting children, and seeing as Maura’s joints are a bit hyperflexible, I am not taking chances.

But to someone else, it might look like “rough handling”.

I also feel like I can’t speak loudly to Maura.  I’m not allowed to show anger to her in public.  I can’t speak loudly so she can hear me over her screaming.  In many ways, I feel like I’m not able to parent her in ways I was able to parent my other children.  Because once people figure out that she’s different, then it becomes “Why is that horrible woman yelling at that poor child?”  Um, because that poor child is being a brat and can’t hear my soothing tones so I have to be louder?

And she’s actually aware enough to get when I’m angry or upset because she’s done something wrong.  And that’s okay for her to experience that.   How else is she going to learn that some things aren’t acceptable to do?  By me smiling and going “Now sweetie, that’s a big no-no.”?

I will promise you, that if you witness Maura in the midst of a full meltdown, I am no longer focusing on whatever caused the meltdown.  At that point, I know that we’re living in the moment, and that moment needs to be diffused.  I will use stern tones to let her know the behavior is not acceptable, use words like “naughty” about her behavior because she understands that, and will use short sentences so she can easily process what I’m saying like “This is NOT a choice!”  I usually won’t be smiling, because smiling will either make her angrier, or make her think she can get away with what she’s doing.  I have to have the stern face, the stern voice, the stern attitude.  But stern doesn’t even mean I’m mad, or angry, or about to go ballistic on the girl.

Do you know what will cause my temper to start rising however?

People staring at us.

People watching my every move in case I’m about to become horribly abusive in public.

Which is why I’ve learned to put on blinders.

It’s a very strange position to be in – I block you all out, yet I am hyperaware that we’re being watched, being judged.  I know you’re there, I’ll meet your eye.  I have no shame because I am doing nothing wrong.

What is funny to me is after that last big meltdown at the mall, my friend met us outside, Maura had calmed down, and I joked “Well, another successful shopping trip where we didn’t get the cops called on us for abuse.”

I live our life knowing that there could be a day when some well-meaning stranger does call the police or security on us because of a meltdown.  Because it happens all the time in our world.

In the meantime, I will still take Maura places, because that’s how she’ll learn to behave in public.  She can’t learn if I keep her hidden at home, away from all the stares.




Get every new post delivered to your Inbox.

Join 6,789 other followers

%d bloggers like this: