Thursday, May 21, 2015


A few years ago, Olivia’s team at school decided that because 5p- syndrome is so rare and most people have never even heard of it, she would be better served if we went with an Autism label on her IEP.

I have never said that Olivia has autism. She has a few of the symptoms, but those can be attributed to her diagnosis of 5p-. A lot of the symptoms of 5p- mirror those of autism. Even after the school put the autism label in her file, I never used it.

I kind of loved this school psychologist. He said that Olivia never really talked to him directly but she would be silly, would answer direct questions with a nod or a point or a whisper if necessary.

He wants to take the autism label out of her file because he’s afraid that if we ever change school systems, other teachers/administrators/psychologists will see Autism and not look beyond that.

He also explained that her diagnosis of 5p- syndrome almost guarantees her services as long as we feel she needs them. There is no need to tack autism on top of that.

His assessment of Olivia is that she’s very smart (duh), she’s creative, she can be quite charming and she’s extremely stubborn.

Ha! Like we didn’t know that one.

But seriously, he got all that from about three twenty minute sessions with her, during which she didn’t talk much to him. He said that sometimes she would start to answer a question, realize what she was doing and shut down again. That’s not an autism thing, that’s a stubbornness thing.

So we will continue to expose her to her peers, put her in the mainstream classroom next year with all the other second graders with as much or as little intervention as necessary to keep her up to speed academically and we’ll push her socially. It’s what she needs.

What she doesn’t need is a label that doesn’t fit her.

Honestly, I’m glad we’re losing the autism label. I went with it when they suggested it before kinderkids because they said it would help her receive and keep services. From what I learned yesterday, she doesn’t need it and in the long run, since it’s not an accurate label for her, it could hurt her.

So we’re going forward without the label. It doesn’t change anything about Olivia. She’s still her smart, creative, stubborn little self. Those characteristics will serve her well throughout her life.

And today's hair, just because:

Wednesday, May 20, 2015

Five More Lunches

That’s how we’re counting down the school year. We only have to pack five more lunches. Go us!!

The school is having a ‘Right to Read’ week and yesterday Olivia went to school dressed at her favorite princess. Guess which princess she chose…Elsa, right?

Nope, not this time. She informed me that there would be a lot of girls dressed as Elsa and so she wanted to wear her Rapunzel dress. Go Liv, dare to be different!!

Today the students were encouraged to dress as their favorite fairy tale character, animal or villain. Olivia chose Tinkerbell.

Yes, we’re really lucky to have a very extensive dress-up closet/bin. She has a Tinkerbell outfit that only needed a pair of pants and a long-sleeved shirt under it to make it weather/school appropriate. If the temps weren’t in the mid-50s today but instead at a normal 70-something, she could have worn a tank top or a short-sleeved shirt under the Tink costume but alas, our weather is bi-polar and so we keep going up and down and then up again. I hope Mother Nature gets her meds figured out and settles into typical temps for this time of year soon.

Ahh but Tinkerbell. She’s so darned cute. How awesome is it that O’s hair has grown to the point that I can do this to it?

So much fun to be had with only five days left of first and sixth grade.

Tuesday, May 19, 2015

Dropping Physical Therapy

Tom and I met with the physical therapist from Olivia’s school last Friday.

Miss Mary Rose called us because she won’t be at a meeting we have scheduled with the school psychologist/teachers/principal for Wednesday. Miss M.R. has to make a recommendation to be presented at that meeting and she wanted our input before finalizing her report.

Her feelings are that she’s brought Olivia as far as she can in gross motor function.

Here are the things Olivia can do:

She can navigate the halls with no trouble. She doesn’t walk with a limp or any visual sign that walking is at all difficult for her.

She can run. She can play any game asked of her in gym class. She may not CHOOSE to play those games but she CAN play them.

She can climb. She doesn’t like to do this but she can do it. She enjoyed climbing when we’re at the park but doesn’t really trust other kids around her not to get pushy.

She can take the stairs with alternating feet without holding on.

She can hold the plank position.

She can hold the Superman position.

She can hope on one foot.

She can catch a ball with just her hands, not using her body against which to catch it.

She can do so, so much.

Miss M.R. said that Olivia’s balance is one thing that they still work on a little bit. O’s got great core strength but standing on a balance beam (about three inches from the floor) and holding out her hands and then lifting one foot is hard for Olivia.

Olivia very much worries about falling so I think it might not be for lack of being able to do this thing so much as her own fear of falling while trying that keeps her from actually doing it.

This summer Tom is going to put a low balance beam in our backyard for Olivia to play on.

See, that’s part of what we discussed with Miss M.R. Playing. She feels like most of the skills Olivia has gained and will continue to develop can be learned through play.

And Olivia’s biggest weakness in school is not gross motor skills. It’s her social abilities.

I got to the school early last week for our meeting with the PT. I was able to watch Olivia as she played at recess. Olivia sat on the ground and played in the dirt. She sat by herself, keeping very much to herself while all the other kids ran and jumped and climbed and swung and slid around her.

Several times during the ten or so minutes that I watched, someone would stop and sit with Olivia. The kids who sat with her talked to her and Olivia looked at them but never talked to them. They’d sit with her for a minute or so then go back to their games.

I want so much for her to have friends, to interact with the kids at school. She needs to be in the classroom for that. So we’re dropping PT and giving her more classroom time.

Obviously we’re leaving it open to bring PT back if O shows any sign of regression, if she loses any of the skills she’s already acquired. But for now, PT isn’t as important as just being with her peers.

Monday, May 18, 2015

A Talent Show

Alyssa’s school puts on a Sixth Talent Show each year. This is entirely voluntary, the students even have to audition to get the chance to perform.

Alyssa and three friends, A, S and T performed a Skillet song.

Can I just be a mom here and say that they were freaking adorable? So much fun and cuteness and they’re twelve and SO BRAVE.

My mom and Tom joined me at the school to watch the show.

As we sat waiting for the show to begin I told my mom that if my school had done something like this, I would have been one of the kids sitting at the back of the room, not performing. I would have WANTED to perform but I wouldn’t have had the nerve, the confidence.

I am so, so glad that Alyssa has awesome friends who encourage her and whom she encourages and that together, they were brave enough to climb onto the stage and sing. They SANG. And it was awesome.

Okay, pulling myself together again. Ahem.

Alyssa is everything I wish I’d been when I was twelve. She’s confident, she’s strong, she’s so smart and can be so sweet and yet she stands up for herself and others when she feels that she or others are being picked on. She has amazing friends who are also smart and confident and kind.

She doesn’t doubt her own talent, her own beauty, inner or outer. She exudes a strength that I hope grows and blossoms as she does.

This talent show was so much fun, for the kids as well as the parents. The kids made their own costumes, came up with their own acts, picked their own music. They performed their way and it was amazing.

Twelve is so great for Alyssa. I hope it just keeps getting better.

Thursday, May 14, 2015

To Remember and Appreciate

I want to appreciate how far she’s come. I want to be grateful for every word she says. I want to be happy that she can follow me up the stairs and back down and then back up again, talking the entire way, issuing orders requests for a different fancy dress, a different doll, new batteries for her keyboard and potato wedges for dinner if you please.

I want to be able to step out of my tired self and see how lucky we are that she’s here, that she talks to us, that she understands us, that she can walk and run and be silly and read stories and tell us all the thoughts tumbling around in her beautiful head.

But instead I get impatient and annoyed when she doesn’t like the third dress she tried on. The first one was too big, the second was too short and the third was too itchy. I snapped, “Liv! I’m tired of putting dresses on you only to have to take them off you and hang them up. Pick ONE and then we’re done!”

I hate that I make her cry with my harsh words, that she’s becoming so sensitive to my moods and that I yell and get grouchy with her.

I hate that she will ask me if I’m mad at her because it seems to her like I’m always mad at her.

We expect so much from her because she’s already proven that she’s up to the challenge, that she can meet our expectations. Honestly, I don’t think we treat her all that different from how we treat her neuro-typical older sister.

But there are moments when I need to step back, step out of my own irritation and bask in how NORMAL she really is in so many way, how lucky we are that the missing part of that pesky fifth chromosome isn’t really slowing her down at all.

I take Olivia’s health for granted on a daily basis. I take her sense of humor for granted too, the way she’ll get my sarcasm and laugh her awesome belly laugh at something I said, something obnoxious that I should have kept to myself but I’m glad I didn’t because I got to hear her laugh.

I take for granted that she understands everything I say, that she doesn’t have to be ‘talked down’ to. I don’t stop to think about the fact that she might have a hard time making a decision if I give her more than two choices anymore. I just give her the options and expect her to choose.

I need to slow down a little and remember how far we’ve come and how amazing she is.

Just like I need to remember how amazing Alyssa is these days with her twelve year old self.

I am so lucky and I need to remember that.

In my moments of frustration when she’s being ‘picky’ I need to remind myself that this is one moment in time, one amazing moment that I can spend either annoyed with my sweet girl or marveling at the fact that she can tell me that something is too itchy instead of signing the words or even just looking at my imploringly, trying to get me to read her mind. Being verbal is a gift. Having verbal children is a marvel. I need to remember that a little more often.

Wednesday, May 13, 2015

On My Kid and Dogs

My mom and stepdad are thinking about taking custody of my youngest brother’s new puppy.

Why does brother M not want to retain custody of said puppy? Because, according to my mom, puppy is too mellow.


M wants a dog that will play, will be a bit growly and maybe even aggressive. Sure, M wants a dog who recognized that M is the head of the pack but he likes his dogs to show spunk, if you will. He wants them smart enough to learn manners but also tough enough to push the boundaries of those manners.

I guess the new puppy just wants to love and be loved.

Have I mentioned at any point in my many years of oversharing that Olivia doesn’t like dogs? I have? Oh, good. Let me say it again. She doesn’t like dogs. She doesn’t like cats either and any other creature with fur or feather or fins can go suck it as far as she’s concerned. She doesn’t like animals because they’re unpredictable. They sniff and they jump and they lick and they bark (or tweet or meow) and she’s afraid of that unpredictability.

One thing (of many, of course) that I love about my oldest stepson is that even though he had three big dogs living in his house he always puts them out in the barn when we come visit. He doesn’t assure Olivia, “They’re nice dogs, they won’t hurt you, don’t be scared.”

No, he just puts them away because he gets that his little sister is scared of them and he doesn’t expect to be able to logic her out of that fear. He respects her fear and just puts his dogs where she doesn’t have to see or hear them while she’s there. I can’t tell you how much that endears me to my stepson. My husband has great kids (all five of them.) I’ve always known this but the way J respects O’s fears and doesn’t try to ‘fix’ them by forcing her to face his dogs is just so sweet and show an amazing amount of kindness.

Back to my mom and my brother’s dog…my stepdad is the one who really wants M’s dog. He swears that if they do take the dog, he’ll (the dog, not my stepdad) will be put into another room whenever O visits.

Okay. Well, I appreciate that they’re going to be as considerate as J is but then I’m reminded that we go to J’s house maybe twice a year. Not a big deal to put your dogs in the barn twice a year for your little sister.

We go to my mom’s house at least once a week. Is it fair to the dog to be locked up each time we visit?

I suppose it’s not that big a deal. Olivia loves my mom’s sunroom, if we’re out there, their dog could have free run of the rest of the house, so…yeah, it’ll be okay.

And I’m not suggesting that my mom and stepdad base their decision to get a pet on my or my daughter’s wishes. If the dog is as mellow as they say, he will probably just lay around and ignore Olivia anyway, which is what their cat does and O’s perfectly happy with that.

And for the record, there will be no dogs entering our house anytime in the near or far future. Even if Olivia weren’t terrified of them, I find dogs to be way too much work to ever invite one into my family. Again, that’s just me. I’m glad there are people out there with the patience and energy to care for them. I just know my limits and our cat and his litter box (which lives in the barn) is at the top of my limit for commitment of time and energy to someone who is not human.

Some days the fish even feels like too much of a time suck, what with the three seconds it takes to feed him every single day and the fifteen minutes every two weeks it takes to clean his bowl.

Tuesday, May 12, 2015

No-Win Situations

Last night Alyssa and I were headed toward the school for her Spring Band Concert. (Aside: Can I just say that band concerts in which the musicians are between the grades of four and eight are no enjoyable. Not even for the parents of the musicians. We, the parents can APPRECIATE the concert, but no one actually enjoys it. Just saying.)

One the way there, we talked a little about no-win situations.

Alyssa had been in a ‘conversation’ with someone earlier in the day in which this person was angry at something Alyssa had done.

As an example of the issue let’s say that Alyssa had thrown away a partially eaten drumstick. Let’s also say that her dad found that drumstick and was astounded that she’d throw it away when it had at least three bites of chicken left on the bone.

So he’d confront her about this, right? He’d ask why she threw it away and she’d reply with a timid, “I was full…?”

Then he’d go into a tirade about how she was wasting food and she’d just stand there listening.

After his anger over the wasted chicken, let say he asks her, “Do you throw away your food at school?”

This is where the situation becomes no-win. If she says yes, she throws away her lunch at school, he’s going to be even madder at her for wasting more food.

If she says she doesn’t throw away her food, he’s going to respond that of course she doesn’t throw that food away because it’s junk and she always eats junk.

During our car ride, I told Alyssa that at times like the above, when she knows there is no right answer to a questions someone is asking her, she’s allowed to respectfully ask that person what they want to hear.

She is allowed to say, “I know you’re angry and so I know that no matter what I say is going to be wrong and probably make you even madder at me. I’m sorry for the chicken I threw away. What would you like to me to do in the future if I’m full and don’t want to finish my chicken? What can I do that won’t make you mad?”

She listened and nodded.

I hope the heard the real message there, that sometimes, people are mad and want to stay mad. That sometimes you aren’t going to be able to soothe their mad and the only way to ‘win’ is to ask them point blank what they’re hoping to get out of the conversation. Sometimes asking that question will help defuse their anger enough to settle the situation.

I want her to stand up for herself but I also want her to have tools in her grasp that can help her even when she had to be respectful to those who are angry with her.

I also wish I were better at confrontation myself. I hate confrontation and I never know the right thing to say until after the confrontation is over, which makes me mad at myself because I’m always so smart after the fact.

I’ve got to get better at standing up for myself, if only because I need to be a better example to my girls.