Abby's Map

I'm sure that some of my readers out there are curious as to what high-functioning Autistic even means. Some days, I wonder myself. Ha! So far what I've come to is that at times Abby seems totally typical. She will speak clearly, concisely and intelligently and we'll wonder, "Is she even Autistic? Am I raising her to think she has something that she doesn't?" And some of Abby's grandparents have expressed some similar concerns. I think it's valid to wonder. And even though I live with her daily and have been to the Parent/Teacher conferences enough to know that we're pretty much in agreement that she is somewhere on that broad spectrum of Autism, the line between typical and high-functioning Autism can be a bit blurry.

I had forgotten about this video. I recorded it a couple of months ago. I recently watched it again and found it interesting how it was such a good example of the tics that ARE Abby's Autism. This is a great example of what it's like when Abby's is "ASD-ing out" as I've begun to think of it. Much of the time she behaves very much like a typical 4 year old, but at times like this, she is definitely a kid who lands on the Autism Spectrum. She loves this map and often can point to many different States after being asked only once and can even tell you who in our family lives where, all without the various noises and hand tics.



She kind of pulls it together in the end, though I still have no idea what she is talking about at 1:55, something being raunchy? I don't know. But what makes this video such a great example is that it shows how she flows from typical to autistic behavior. And some days are better than others. Some days, the tics don't seem to affect her hardly at all. Other days, she seems consumed by them, finds it hard to communicate effectively and those are the days we experience more screams and whines.

Hope you are all remembering to take time to enjoy your days as we approach the busy holiday season. I am so swamped with homework and feeling so overwhelmed, but I'm trying to take time to enjoy my kids each day and to do something I enjoy. Yesterday I finished off the chalkboard I created on one of the cabinets in our kitchen. I get so much satisfaction from finishing these projects. Today, I am going to finish painting the living room walls and the bulkhead in the kitchen... and do a ton of homework. I hope. *fingers crossed*

Blogging at 1 a.m.

I should be sleeping and my new laptop (yayyy!!!) is begging to be plugged in, but... I'm going to blog anyway.

We had an interesting afternoon today. Abby went out with her dad to run errands. They arrived home and I heard Abby screaming all the way in from the car to the house.

Whine, whine, whine, scream, whine, scream, scream, whine, whine.

That's pretty much how it went. I asked him if everything was ok on their errands. He said that she she had been fine. She wanted to stay outside, but he said she could go back out after lunch. I asked him if it was ok with him if she had a picnic outside on the deck. It was a brisk, but beautiful day. He agreed. Meanwhile, Abby laid on the floor and screamed through this whole conversation.

Scream, scream, whine, scream.

We tried over and over to assure her that she was indeed going to go back outside. We told her she needed to wash her hands before lunch, like usual.

Whine, scream, scream, whine, whine, scream.

"Abby. As soon as you wash your hands..."

Whine, scream, whine, scream, scream, scream.

you can go outside!"

Scream, whine, scream.

Hands washed, screaming the entire time, Abby was "escorted" outside, where she screamed some more about wanting to be outside.

Ummm... she IS outside.

She screamed until I sat in front of her, face in my hands saying, "Abby you ARE outside. Shh, shh. This is what you wanted. You're outside. It's ok. Stop screaming. You are OUTSIDE." I asked if she needed a hug and she took me up on that offer. She felt a little limp from all that screaming she'd done.I've been noticing lately that Abby has a tendency to hear what she wants to hear and sometimes, apparently, what she doesn't want to hear. Maybe this is human nature, whatever that means, but with Ab, she really has a hard time letting go. Once it's in her mind, it's stuck there, until something jars her attention to reality. And unfortunately, that can take some time. And can be a pretty loud ordeal. Ugh. Exhausting... for everyone involved.

Now before you start praising me for being so patient and understanding and you "don't know how I do it"(which I really appreciate btw)... I was not all patient and poised. I raised my voice a couple of times. I tried muffling some screams in an attempt to keep Bean from being woken up. Abby's dad and I had to trade tasks a couple of times to let the other one take a breather to regroup. I was glad he was there. We make a pretty good team. Keeping each other in check. Giving each other an understanding and knowing glance. Sometimes making the situation worse, by giving in to our frustration and taking it out on each other. But in the end, we love each other more for it. No one knows our child better than we do. We're all in this together. Thank, God!

Every Now and Again...

Abby needed a bath last night and I was not in the mood to do bath time. So I thought she could just jump in the shower, play for a few minutes, I'd wash her hair and she'd jump out. She has done this many, many times over the course of her life.


So last night, I told Abby that I was going to go run a shower for her.
"No!" she yelled.
"Yeah." I said, "It will be fun. You haven't had a shower for while. It will be quick."
"No!" she yelled, a bit more emphatically this time.

Me being just as persistent as she is, went ahead and ran a shower anyway. There was a time when she preferred the shower over the bath and I assumed that once she was in there, she'd get over it and take her shower.

I was wrong.


She screamed all the way to the bathroom and once I put her in the shower, she screamed some more. Screamed and screamed and screamed as she clawed at the shower curtain trying to find a way out, screamed as she jumped out and ran screaming naked and dripping wet through the house. Screaming long after I said, "Ok, ok! You don't have to take a shower! It's ok, Abby! ABBY! IT'S OK! YOU DON'T HAVE TO TAKE A SHOWER! ABBBYYYYY! IT'S OK!"

Jeeze, Louise.

Screaming, screaming, screaming. It had been a while since she'd had a scream-fest like that. Let's hope it's a long while before we see another.


After a nice relaxing BATH, dried off and dressed in clean pj's, Abby sat quietly watching the latest DVR'd "Super Why" while I did her hair. She let me put it in 5 tight little buns to sleep in overnight, so she could have curly hair the next day. I'm always surprised by the intricate hair styles she lets me do. There are many quote/unquote "normal" kids her age who would NEVER let their parents do the buns, braids and ponytail styles that Abby lets me do. As I sat parting, combing and twisting her soft hair, I was reminded of another scream-fest we'd had when she was two.

Abby's hair was getting long and was constantly in her eyes. I thought of cutting it into a cute little pixie cut, but couldn't imagine the wrath she would bring on anyone coming near her head with scissors. I didn't figure that would be safe for her or for the stylist wielding those scissors. So I opted to go with barrettes and pony holders. But even those simple devices were regarded with extreme contempt. Whenever I tried to snap a simple butterfly shaped barrette into her hair, she reacted as if I was shoving thumb tacks into her skull. She would scream and rip it out taking a clump of hair with it.

(Notice the "Quiet" face posted in the middle of the mirror as a constant reminder)

Ok, so why force the issue, right? Right. I'm with you. Except that the only thing that would make her more crazy than her mother trying to put barrettes in her hair, was hair in her mouth. This would make her gag and scream and throw herself on the floor and scream some more. (Have I mentioned screaming in this post?) So after months of wrestling with this issue, I decide after one particularly "fun" screaming/gagging/hair-in-the-mouth session, that she was going to wear barrettes. Period.

I took 20 deep breaths, muttered some prayers for patience and persistence on my part, and gently (or not so gently) told Abby that she was going to wear barrettes that day, and if she took them out, I would put them back in, and if she took them out again, I would put them back in, and if she took them out... well you get the idea.


And I did. She screamed, I put the barrettes in, she ripped them out, screaming all the while, and I would put them back. This went on for about 15 minutes until she was sweaty and exhausted (so was I). I finally put her barrettes back in, pulled her up onto my lap with her blankie-snuggle and pacifier, and whispered softly in her ear,

"It's ok, see. Feel the barrettes in your hair. They don't hurt, do they? They will keep your hair out of your mouth. Mamma wouldn't do anything to hurt you, Abby. We're going to put barrettes in every day, so the hair stays out of your eyes and your mouth."

She settled down and literally to this day, has let me do her hair ever since, and rarely complains. I felt sooo bad that day, but I know Abby's temperament. Sometimes she needs to be forced to try new things. I try to let her make her own choices, but every now and again, she needs a little push.


Now let me say again that I felt terrible. I hate forcing her to do things. I question myself at every turn. Was that the right thing to do or the right way to do it?! Well this is one example of not liking the process, but appreciating the outcome.

After watching me get my last hair cut, Abby announced, "Abby's turn!" She wants a hair cut, so I think she's ready for her first trim. Maybe we'll make a day of it for her 4th birthday.

It's a Privilege!

Since starting school in January, Abby's behavior and general happiness levels have improved so much. Not that she was a miserable kid before, she just had so many more behavior outbursts, so one could assume that she wasn't as happy. School has been a Godsend! She attends Early Childhood Special Education (ECSE) and LOVES it. The bus drivers comment often on what a pleasure it is to pick her up in the morning, because she always has a smile on her face and a happy squeal to greet them.


Well this morning was unlike any morning we've had since she's started school. She fought me at every turn this morning. I always try to give her 10- and 5-minute warnings as we go along. I've found that if she knows what to expect, she is more cooperative when the time comes to perform a task.

"Abby, it's almost time to get dressed. Just a few more minutes." I said.
"NO! I want to sit on the couch and watch tv!" she screamed.

What? Where did this come from?!


"Abby, it's time to get dressed." I said.
"NOOOOO!!!" she screamed, throwing her toy across the room and herself on the floor.
"It's time to get dressed. 1..... 2..... 3." I said, taking a deep breath.

The 1-2-3 count works like a charm in our house. It's as if it has some magnetic pull and resistance is futile. Back when the 1-2-3 method was first introduced in our house, if Abby didn't come at the count of "3" I went and got her. There was no "3.5" or "4". For instance, if I say "3" and she isn't standing in front of me, that means that I am going over immediately, picking her up and dressing her. End of story. With proper execution, the 1-2-3 count can be brilliant!

So back to this morning. She screamed "NOOOO!!!" at every menial task that must be done in the morning. You can imagine that how much fun I was having. (Perhaps now would be a good time to let you know that I am fluent in sarcasm.)

Now I'm used to Abby not wanting to do what she is told, but usually she can be talked into it knowing that school is the reward. But today, and it broke my heart, as I was putting on her jacket, she looked up at me with tear filled eyes and without screaming (for the first time this morning) said, "Wanna stay home." Ugh! I wanted to keep her home with me and snuggle on the couch watching cartoons all day! But instead I said, "Honey, you GET to go to school! School is a privilege. It will be so much fun. All of your friends are there."

This is my new thing. School is a privilege. It's not something we have to do. It's something we GET to do. How fortunate are we in this country?!! Sure, I can gripe about the quality of our schools (cough-Idaho-cough) but we get to go to school. And it's even more spectacular that Abby gets to go to school. There are plenty of countries where girls aren't allowed to go to school, let alone a little girl with special needs. We are really and truly blessed.


I'm so thankful for Abby's teachers and her school. I'm confident that Abby will have a bright future, with teachers and teacher's assistants along the way who care for her and care about her education. And I will be there every step of the way, reminding her of the privilege she is blessed with, and reminding them of the importance of their job and how much they are appreciated.

Now let me remind you that I am not a perfect parent. I lost my cool once this morning and told her to "shut up" rather than "be quiet" during a particularly aggravating scream.
Most of the morning, what I was really tempted to say yell was,
"Shut up and quit yer screamin'!
Get your butt dressed and get on that bus!
Mommies' got a nap to take and a blog to write!"
But I tried really, really hard to use encouraging words.
And this morning, I did a pretty good job.

In the end, so did Abby. She whined a little bit when she saw the bus, but she sucked it up and had a smile for the bus driver.

I hope she has a good day at school.

Communication Breakdown

"The most important thing in communication is to hear what isn't being said."
~Peter Drucker (1909 - 2005)

One of the many roadblocks we faced when trying to
"diagnose" Abby's autism, was that she talked.
Kind of.
And the two main symptoms of Autism that people/pediatricians focus on is eye contact and speech. Abby participated in both of these things, so people were quick to dismiss our fears.

Abby actually has a pretty large vocabulary. The problem lies not in her inability to talk. The problem lies in her difficulty to communicate using those words. Until starting school this past January, she mostly engaged in what is known as Echolalia. As defined by Wikipedia,

"Echolalia is the repetition of vocalizations made by another person. Echolalia can be present in autism ... Asperger syndrome, Alzheimer's Disease and, occasionally, other forms of psychopathology. It is also frequently found in blind or visually impaired children, although most will outgrow this behavior. When done involuntarily, echolalia may be considered a tic."

It was very frustrating to know that your child CAN speak, but not to understand why she "chooses" to scream rather than use the words you know she has in her vocabulary. I remember many a time losing my patience and sometimes my temper over what seemed like her refusal to use the words she knew. Instead of asking for her drink or for the crayon she just dropped, she would scream and throw a fit. Then when I would ask, "Do you want your crayon?" She would repeat, "Want your crayon?"


Because I didn't know about Echolalia, I viewed this as Abby's refusal to use words. I would insist as she was throwing tantrums that she "use her words" before I would "give in" to her tantrum. Well this helped nothing. It only made the tantrum worse. Because what I didn't understand was that she might know how to say the words, but she didn't understand how to communicate her wants and needs using those words.

I look back on those times that I lost my patience with her, wishing I could go back knowing what I know now. I wish I could go back and be the patient and loving mother that I always wanted to be. Not the mom who had been screamed at ALL.DAY.LONG. by the little girl with the giant scream and the mom whose patience had worn very thin. I feel badly for the sweet little girl trying to communicate to a mother who had not yet learned to "hear what wasn't being said." I still fail miserably at this some days. But thankfully, those days are few and farther apart now. I can only move forward and do better tomorrow than I did today.

This morning I was treated to a rare gift. My husband let me sleep in until 10 am!!! It was wonderful. When I finally did wake up, Abby was seated at the table, coloring in a notebook with colored pencils. She said to me, "Hi, Mom! Want to color? Come sit down in the seat." as she pointed to the dining chair next to her. She didn't scream at me once. When I complimented her on her excellent choice of words, she smiled and said, "Come on, Mom! Let's color!"

I cannot express to you how proud and thankful I am to have heard those sentences from her today. I'm crying now as I type these last words. The relief I feel at knowing that it's possible! By being patient and looking to understand what it is that Abby is trying to communicate when she doesn't use words, she is finding her voice and finally, finally learning to communicate. This makes each scream a little more tolerable and thankfully, like my least proud parenting moments, those screams are becoming fewer and farther apart.

There is hope. Always hope.