Eight

Eight wonderful, life-changing, challenging, glorious child-filled years. Eight years of questions. Eight years of learning as we go. Eight years of are we doing this right. Eight years of movie nights, trips back and forth across the country to visit family, picking up the same toys and wiping the same smudges off the windows. Eight years of sloppy kisses, tight hugs, I love yous and goodbyes.

As I see it, we've had eight years of normal.

When people ask how we "deal with it" or how we stay so strong, I always say the same thing. I've never known anything different. I came into this the same way she did. She is still (and always will be) Mykaya Noelle, my headstrong firstborn with the big blue eyes and beautiful dark eyelashes for miles. I relish the memories of her babyhood and toddler days the same as any other mommy. I have the same pictures, the same uncertainties, the same regrets as every other first time mom.





She is simply beautiful, and I am so very lucky that I have been chosen and trusted to be her mom.

I can't imagine a life any sweeter.

Black and White

We have known for a long time that Mykaya exhibits some (if not all) of the symptoms of Central Auditory Processing Disorder. Almost all of the professionals we have worked with have agreed with this, so we were told to take a trip to Grand Forks to visit Dr. Fire. He is the foremost in the field of Audiology and even though his office is 4.5 hours from Bismarck, everybody we mentioned his name to had heard of him. Talk about your reputation preceding you! We made the appointment in March and last Thursday, May 19th, Kaya and I took a trip across ND to see about getting a diagnosis.

You know, something concrete to go on.

Something black and white that can be pinpointed and treated.

Because as cautiously optimistic and relieved as I was when we got the diagnosis of Aspergers, it's still just a "possibility". It's still something we can't treat, and it's still something that is lifelong and "gray-area".  As a mom, I want to fix everything. And as a Casie, I want it to be fixed NOW! That's just not our reality. It's not a boo-boo you can kiss away and put a band-aid on. It's not even something you can get an x-ray of to prove.

Besides, that rug has threatened to be pulled out from under us recently. Her psychologist, Dr. Doerner, who was the guy that diagnosed her in the first place, after seeing her a couple more times, has decided that maybe she doesn't actually have Aspergers. Also, she has made such a HUGE improvement in function in just 4 months of occupational and speech therapy that we've decided to discontinue it. Yay Mykaya! Such a little fighter :) This makes me also question the diagnosis.  If it's a supposedly lifelong condition, why is she getting better so fast, with just a little help? This has been the MAJOR reason I haven't written a blog post in so long. Because I almost feel like I'm lying. "For the Love of an Aspie-Sorta, Maybe, But Getting Better" doesn't exactly have a ring to it. There's my honesty friends.

Back to our little road trip. We had a blessed 9 hours of alone time in the car. Just her and I. It was so nice to be able to talk to her and get her ever-changing opinion on everything. We stopped at a coffee shop in Jamestown and had a drink and a pastry and chatted with the barista. I tried to talk her into opening a shop in Bismarck, Mykaya chatted with her and thanked her for the "coffee". It wasn't until I left that I realized how lucky I am. It is such a proud moment when your child offers an unprodded thank you to a stranger. It's an even prouder moment when your child hardly talks to anyone and yet is still the most polite and loving child you know. That's my kid. Ha.

We got to Dr. Fire's office about 45 minutes early so we sat and played Hangman on my Kindle and chatted with another elderly patient that was also waiting. Once Dr. Fire got back from lunch, he took us right into his office. He was so warm and welcoming that Mykaya took to him right away. He asked the usual questions: Any pregnancy or birth complications? When did she start sitting, crawling, walking, smiling, potty-training, etc? When did you first notice something was wrong? Did she ever have a head injury? After all that, he took her in a sound proof booth and had her put on a pair of headphones through which she would listen to him and also a recording of some words/phrases. Throughout the testing, I could see her through a little window, and she could see me if she wanted to (she didn't).  There were times when her face was so contorted and scrunched up that I could swear she was going to cry. She was giving it her all, and trying sooo hard to stay focused and to do her best. I couldn't have been prouder.

He told me right away that he saw a definite asymmetry between her ears. Like, one ear was doing better than the other, but he told me he would have to wade through all the data and score her before he could be more specific. He told me he would call me the next day and to set aside an hour for the conversation.

The next day he called and told me that she has Moderately Severe Central Auditory Processing Disorder. He told me that children that have this to the degree that Mykaya has it, are pretty much unable to read or spell because there is a disconnect between the sounds/words they are hearing and how their brain interprets them. Suddenly, the 3 notebooks that she has kept since the first week of kindergarten full of words, and the obsession with asking how to spell EVERYTHING (movie quotes, names, objects, places, everything) made total sense.  She had developed her own coping skill to be able to function. She was memorizing how to spell and read, instead of learning the phonics way. I liken it to a deaf person having heightened senses of sight and smell. She is extremely visual, that's why the visual charts help her so much. Because she doesn't interpret what we say correctly. It also explains a lot of her social difficulties. She has an especially difficult time with background noise or listening to 2 different sounds/voices at once. Imagine trying to carry on a conversation on a noisy playground. Having somebody ask what you did this weekend while in gym. Or how about somebody talking to you while the teacher is talking. Might look like you struggle socially too huh? Makes the Aspergers diagnosis seem just a possibility now.

He told me that he will send me a lengthy report in a couple weeks that details what we can do for her at home, school, and also things she can do to help herself. One of my comments was "Boy, imagine how well she would be functioning if she didn't have this." Duh. His reply was, "Well, that's what we're hoping to find out." He would like to re-evaluate her in 3 years because there will be different therapies to implement at that time that her 7-year-old brain doesn't understand yet.

I am so happy to have something black and white that can be treated and proven and not taken away. Sounds crazy, but what are we supposed to do about all the gray?

The Misunderstood Child

The Misunderstood Child

I am the child that looks healthy and fine.
I was born with ten fingers and toes.
But something is different, somewhere in my mind.
And what it is, nobody knows.

I am the child that struggles in school,
Though they say that I'm perfectly smart.
They tell me I'm lazy - can learn if I try -
But I don't seem to know where to start.

I am the child that won't wear the clothes
Which hurt me or bother my feet.
I dread sudden noises, can't handle most smells,
And tastes - there are few foods I'll eat.

I am the child that can't catch the ball
And runs with an awkward gait.
I am the one chosen last on the team
And I cringe as I stand there and wait.

I am the child with whom no one will play -
The one that gets bullied and teased.
I try to fit in and I want to be liked,
But nothing I do seems to please.

I am the child that tantrums and freaks
Over things that seem petty and trite.
You'll never know how I panic inside,
When I'm lost in my anger and fright.

I am the child that fidgets and squirms
Though I'm told to sit still and be good
Do you think that I choose to be out of control?
Don't you know that I would if I could?

I am the child with the broken heart

Though I act like I don't really care.
Perhaps there's a reason God made me this way -
Some message He sent me to share.

For I am the child that needs to be loved
And accepted and valued too.
I am the child that is misunderstood,
I am different - but look just like you.

(Kathy Winters/2003)

Update

Wow! It's been a long time since I've posted anything. There are many reasons for my neglect, which I will address in separate posts over the next few days. The first is just that we've been busy busy busy! It's been a whirlwind of appointments, meetings, crazy work schedules, a new organization that we've been getting acquainted with, and some fun thrown in too :)

We've been having our usual schedule of Occupational and Speech Therapy twice a week and it's been going really well. Mykaya has become completely independent (except the use of her visual support charts posted all over the house) with showering, brushing her teeth and getting herself ready for school in the morning. She is now working on 4-step sequencing of directions and making her own visual supports. I am attending a seminar on visual supports on April 12 so I can hopefully help her learn how to make her own. There has been a HUGE improvement in a very short time so I feel that things are moving rather quickly in the right direction. We've also noticed that she has opened up a lot more over the past month. She engages us in conversation rather than answering our questions only. She has just really blossomed and I thank all of the wonderful professionals that work with her on a daily basis for the progress she's making.
 
We had our 2nd IEP meeting on March 22nd and were able to draw up an IEP for her. FINALLY! It's been a 2 year fight for this and I feel so thankful that Northridge has taken her needs and met them with an actual-on-paper plan. I will go into more details on the actual IEP when I get my copy :)
 
We started chiropractic care a couple weeks ago. We are seeing Dr. Sara Weigel at Active Life Chiropractic and we absolutely LOVE her! She has adjusted the girls 3 times already and because of the home-y atmosphere of her office the girls can kind of roam around and feel very comfortable there. They go in and get adjusted by themselves while I wait in the waiting area. I have noticed a big difference with sleep and the girls say they feel better so that's good.
 
The ND Autism Connection has become a great resource for us. I have been to the monthly support group meeting and Mykaya is involved in the play that they are putting on. She developed her own character (Ariel princess) and is really enjoying being on stage. The play is tomorrow and she could not be more excited. Due to work schedules, I will not be able to attend, but Jeremy will be recording it on the camcorder so I can see my little star in action! I am so very proud of her for showing the courage to step out and do something out of her comfort zone. It's very encouraging for me to see her participate in something outside of school that she enjoys so much. They also have several other activities and get-togethers throughout the year, so we look forward to getting to know other parents and children on the spectrum.
 
We are starting to enjoy the outdoors again, since the thawing has begun here in Bismarck.  Jeremy and the girls took Maestro out for a walk yesterday while I was working and they had a blast getting outside and having fresh air. We will hopefully be getting their bikes out this weekend and tuned up for many rides this spring and summer :) The girls are also starting swimming lessons next week at the Y during their after-school time there. They are excited to get back in the water in time for river trips this summer. Hopefully they can be a little more independent in the water.
 
Well, I guess that's a pretty good update; more later!

With love,
The Schulz's

P.S. We're gonna be on the news! One of the news stations here in Bismarck is doing a story on our family for Autism Awareness Month. They are filming this coming Thursday, April 10 in Mykaya's classroom and then at our home in the evening. Kind of exciting! I will post a link to it when it airs and try to let you locals know when we will be on :)

Parent-Teacher Conferences

Last Thursday we had parent-teacher conferences for both Mykaya and Laney. I am a fan of how Northridge does this (maybe all schools do, but it was quite convenient); they schedule them back to back so you can just sign a paper saying "yeah that day/time works for us" and be done with it. Working-mom-and-dad-friendly? Check. Anyway, we started with Laney's teacher, Mrs. Just, who is every bit as awesome as Mrs. Jahner, we just don't talk to her as often. I talked to her about my guilt about that, and she reassured me saying, "You can only do what you can do, and Mykaya needs the help. Laney doesn't."  Well, Miss Laney came from a 2 day a week Kindergarten in Washington to Northridge, which is full-time. She was pretty far behind when she got to Northridge in December, but has already almost caught up to her peers. Mrs. Just has absolutely no concerns with her, she said she is a joy to have in class and is confident she will be completely caught up with her classmates by the end of the year. She said occasionally she gets in trouble for being "too chatty" and I laughed and said, "That's Laney-she's definitely my daughter!" After we left there, I couldn't help but remember my first conference with Mykaya's kindergarten teacher. There were already so many concerns. It was so upsetting to go and hear how scared she was, how she would hide in the bathroom during class, how she wouldn't really interact with anyone, and how hard of a time she was having academically. At that time, I was reassured by the teacher, who told me she would get used to school and things would get better with time. I believed her. Here we are 2 years later having pretty much the same issues.

Next we sat down with Mrs. Jahner. Oh how I loved this time to spend with her, just one-on-one! She is so positive, it's very encouraging to see her. She started out by showing me how she has posted visual charts on Mykaya's desk to help with classroom tasks, downtime, etc. She asked what I thought, and I told her it was perfect. How awesome of her to take what Kaya's responding well to in therapy and implement it in her classroom without even being asked. She then showed me a project that Mykaya and another girl in her class had chosen to work on together. Mrs. Jahner said she was excited to see them work together because it was an art project and they are both her artsy girls! It turned out really nice and I was glad to hear she had worked with someone without being asked.

Then we sat down with the scores. We had already been prepared at the IEP meeting we had last month so it wasn't a shock. But comparing her MAP scores with Laney's was a bit of a surprise. Some history on the MAP assessments. They are done three times a year starting in kindergarten and are shown on a graph during conferences to show progress over the year. The scores start at a certain level in kindergarten and continue up through 6th grade until they are (hopefully) the highest they've ever been. It's not a percentile score, its a numerical score. Hopefully that makes sense, how I've explained it.  Anyway, Laney's scores are already higher than Kaya's. That means Mykaya is scoring at a low Kindergarten level in math and reading. I hadn't looked at it that way. A bit of a shock. But you can't go forward if you don't know where you are!

I try not to compare my girls; I feel very guilty when I do. Looking at it a different way though, if I didn't compare them, I probably wouldn't even know anything was wrong or to what degree. As long as I don't turn it into a contest I think we're good. :)

With love,
The Schulz's