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

Dr. Seibel

We now have a pediatrician on our team. Yay! Her name is Dr. Melissa Seibel and she totally rocks. She has a super sweet, quiet, almost shy personality, which is in stark contrast to me so it should work out great!

Our first visit with her consisted of me going through my notebook. I don't think I have referenced "the notebook" yet in any of my posts. It's basically chock full of EVERYTHING that has ever been done on Mykaya. Test results, assessment forms, doctor reports, etc. It makes appointments like these very easy; you should see the look on people's faces when I open the book and they see what's in there. Dr. Seibel's reaction was "oh wow, you have everything!" I've learned that nobody else is going to keep track of it all in one place. It was great that I have it because even though I had requested records from several places at the beginning of February in anticipation of this appointment, not much of it had arrived. Pretty disappointing.

The first thing we did was go over the MRI results from November. The day of the MRI, we were met in recovery by a neurologist, who told us that they had found nothing concerning. We were sent on our way with a copy of the images on a CD (which I requested). I later called and got the report of the MRI and was stunned to see that it said there was a problem with her pituitary gland. It said "possible pituitary hypoplasia" due to a smaller than normal pituitary gland. I did some research on that and there isn't much out there. Your pituitary is the master gland in your brain which communicates with the endocrine system. The main thing it regulates is the hormones in your body, including growth.

Over the last year or so we have noticed that Mykaya seems to be growing "out" rather than "up". When they measured her at Dr. Seibel's office she measured 48.5" tall and weighed 66.6 lbs. She is at the 38th percentile for height and 88th percentile for weight. That was concerning to me because she has always been right at the 50th percentile for both height and weight. I talked to Dr. Seibel about that and she said she will not be worried until she goes below the 25th percentile for height. I (reluctantly) agreed. But she does want me to take her in for some bloodwork to check her thyroid function because of her rapid unexplained weight gain. We will be doing that today after OT/ST.

We are going to try out a new tactic for preparing her for the blood draw, which is no preparation. She has no idea and she won't until we get in there. I'm not sure if it's a good idea or not, but we are at a loss. Last time, she was fully prepared and still freaked out because of the anticipation. We're hoping it will happen so fast that she won't have time to really think about it too much. I didn't want it to be looming over her all day today. We will be taking her up to Dr. Seibel's office to get numbing cream put on, then heading down to the lab. The worst thing about this is that when we were preparing for the shot last month, she kept asking "are they gonna take my blood out?" and I kept reassuring her that they weren't. So what now? I'm thinking about having us both get poked at the same time so we can go through it together. I will let you guys know how things go, and the results should be back tomorrow.

The other thing we went over was the abnormal EEG. She would like to set us up with a neurologist to order another EEG and see if we get the same results again. We can then go from there as far as whether a diagnosis of a seizure disorder is appropriate, or if we can get some more information. I was very agreeable to this as we did not get a lot of information the first time. We are scheduled to meet with Dr. Siruwan (the neurologist) on April 22. The EEG will be sometime after that.

Cross your fingers for us for the blood draw today!

With love,
The Schulz's

Mother Warriors

Yesterday I received 2 books in the mail that have possibly changed my life, and hopefully Mykaya's. My amazing friend, Megan (love you girl!!) sent me 2 of Jenny McCarthy's books. As you guys might know, Jenny's son is autistic and she has been a huge advocate for awareness and also non-traditional therapies and such.  I have read about 2/3 of the first book, Mother Warriors, and am just blown away.

First of all, we are all hearing about the whole "do vaccines cause autism or not", and there are sooo many perspectives on this and not a whole lot of research to support it. I personally do not feel that the vaccines themselves can cause autism, I feel that it may be the irresponsibleness (is that a word?) of administering the vaccines that can hurt some children. For instance, kids should not have so many shots at the same time, so young, when they're sick, or are immuno-suppressed. They also should not be given shots that contain Thimerasol (mercury). I now ask each time the girls get a shot just to be sure. Being a young uneducated mom, I held down both my girls for the minimum vaccines required (they did not get the chickenpox vaccine until they turned 5 and have never received a flu shot) but Laney's were given in a more spread out manner than were Mykaya's. Neither child was ever vaccinated when she was sick, but they both received 33 shots just like most babies. The interesting thing about that is in 1983, the vaccine schedule was so different. I found a comparison between then and now here. Interesting. Just my 2 cents.

I also am very interested in the naturopathic manner that she has chosen to help "heal" Evan. I have always been intrigued in homeopathy and follow most beliefs of homeopathy without even knowing it. For example, I hardly EVER take medicine, nor do I give my kids medicine. I feel that it's important to find out and treat what is going on within my body before I will treat the symptoms, and allow my body to heal itself without intervention. I always just thought I was afraid of medicine, which I guess I am. I am a very healthy person, and so are both my girls. With the exception of Mykaya's aspergers, both of them are in excellent physical health. Laney was diagnosed with mild asthma around age 2, but hardly ever needs any breathing treatments (once a year if that).  We eat a well-balanced diet and both kids appreciate a wide variety of foods. We do not have white bread in our house ever-I'm not even sure my kids know it exists. If Mykaya could, she would eat plain white rice for every meal! We do grapes, apples, strawberries and oranges for snacks, we try to do whole-grain whenever possible, and no sugary drinks or soda here! Laney's favorite drink is cranberry juice while Mykaya prefers water to anything else. 

Because of what I have already learned and researched about this method of biomedical treatment, I would love to implement some of these things into Mykaya's plan of treatment. After discussing things with Jeremy, we've decided we will probably start with the GF/CF (gluten-free and casein free) diet. Funny thing is, Mykaya already kind of keeps herself off of almost all dairy on her own-she refuses to drink milk, she doesn't like cheese and won't even eat yogurt. Really the only stretch here will be not cooking with dairy and making sure we don't have ice cream in the house (which is a rarity anyway). Sherbet only :) The gluten-free is gonna be the hard part! I am going to switch our meal plan to the gluten-free so that will be a huge help. We are also blessed to have a wonderful school that has a dietician on staff to help with dietary restrictions. But even their normal menu is pretty darn nutritious compared to a lot of schools! Check it out here with the nutritional analysis here.

Lastly, I want a consultation with a naturopathic doctor. We have a couple here in Bismarck, but I think I've chosen this one. Since insurance does not cover these costs, I will be very careful about what we get into with her.  I definitely want her tested for pyroluria as she has some of the symptoms, and several other deficiencies that I think she may have.

After reading this book and researching natural medicine a bit, I have a whole new vocabulary! I feel like a whole world is opened up that I didn't even know existed. Of course, I approach everything with a healthy amount of skepticism, so am not looking for a magic cure-all. If some of her symptoms can be alleviated, why not give it a try. One of the huge life lessons I have learned from all of this is flexibility and openmindedness. I am looking into things I would have never thought of looking into. I can't be closed-minded about anything, and I have to keep my own feelings and anxieties about certain things out of this. I will still trust my instincts but I can't let my adult jadedness stop something that could really help my daughter. It's been a hard lesson but a necessary one.  I look forward to keeping you all informed!

With love,
The Schulz's

Stealing

Sooo...Mykaya did it. The thing all kids do at some point and usually stop after being scolded a time or two: she stole something. The circumstances are pretty sad though, and it made me wonder how many times she has actually done this and I didn't know.

The learning disabilities coordinator I mentioned in this post, Mrs. Serr (pronounced seer), took Mykaya into her office last week for a small portion of the testing they will be doing with her. I talked to Mykaya on the phone that day and she told me she had gone to see Mrs. Serr and that she had done so well, she was allowed to choose a prize. She chose a clear cube-shaped paperweight with a rose inside. When I got home that night, Mykaya had left me a note on the floor with the rose that said "Here is the rose I got from Mrs. Serr. Ainit beautiful? Love Mykaya". I thought it was really pretty but a strange prize for a child. In the morning, it was gone so I knew she had taken it to school or put it away. I didn't think of it again.

That afternoon I got an email from Mrs. Jahner. She said she had noticed Kaya with the paperweight and hadn't seen it before their field trip to the city library that morning, so she was concerned that's where she may have gotten it from. She said when she asked Mykaya where she got it, she replied "I don't know, I guess my house." I replied that she actually had gotten it from Mrs. Serr the day before for doing a good job. It was a red flag for me that she had been so excited to tell me she got it from Mrs. Serr but then told Mrs. Jahner a different story. I asked her to find out. She emailed later to say that Mrs. Serr had not given it to her and Mykaya had stolen it while she was in her room. Mrs. Serr was shocked and had no idea when she could have taken it-she was with her the whole time. Mykaya was walked down there and had to give it back. When they asked her why she stole it, she said "because it was so beautiful". If you know Mykaya, that probably just broke your heart. She is one of the most kindhearted people and obviously had no concept of the fact that it belonged to someone else. She wanted it, so she took it. I apologized and told her we would nip this in the bud.

When I got home that night, I explained stealing to her and reiterated what Mrs. Jahner and I had talked about. She told me Mrs. Serr had told her that was one of her favorite things because her daughter had given it to her. Yet, she still stole it. Sigh. I scolded and scolded and told her she would need to write her a letter to apologize. I told her what to say in the letter, and Laney helped her draw a picture of the paperweight. We sealed it all in an envelope to give to her the next time she sees her. I felt this was the most appropriate way for her to apologize because I am afraid Mykaya will have forgotten all about it by the next time she sits down with her, and I feel that Mrs. Serr deserves an apology.

Hopefully, this will not happen again. If it does, we know what to do. :)

With love,
The Schulz's

Psychological Assessments

Last night I went through all the paperwork - forms, assessments, etc. that we have to fill out for various agencies and sat down for a good hour and filled them all out. It was sorta exhausting but obviously worth it. The 2 assessments that the school psychologist, Jessica, gave us I was calling "Mykaya's checklist". It was weird, it was like the questionnaires were made for her.

The first one was called the BRIEF assessment, which is a test of Executive Functioning. Apparently she must have quite a few deficits in that area :( You can read more about EF and what it is here. I felt a little weird because looking back at all the answers, I mostly answered with 'often a problem'. 68 times out of 86 questions, to be exact. 13 of them were 'sometimes a problem', which leaves 5 out of 86 answers being 'never a problem'. A few examples: "When given 3 things to do, remembers only the first or last" (Often-actually always, but that's not an option on this test), "Forgets to hand in homework, even when completed" (again, this is always. 'Often' gets the point across though), and "Needs help from an adult to stay on task" (Often). Now if that's not somebody taking the time to pay attention and using the appropriate assessments, I don't know what is. Yay Jessica! 

The other form was the Social Responsiveness Scale. This assessment was basically 65 questions about how Mykaya does in different settings. I had to choose between 4 different levels on this one: 1.Not True, 2.Sometimes True, 3.Often True and 4.Almost Always True. For example, "seems much more fidgety in social situations than when alone" (4) "has trouble making friends, even when trying her best" (4) or a huge one, "offers comfort to others when they are sad" (1). When someone is sad, Mykaya is clearly bothered and uncomfortable but is unsure what to do about it. She usually just walks away.

Honestly, some of this stuff probably pertains to a lot of kids, some of the time. But in Mykaya's case, this is our reality, all of the time. When her OT eval showed her to be 3 years behind, after I got past the initial shock, it was like yeah that's about right. It's like she was growing and changing up until about 3-4 years old, then just STOPPED. You look forward to that part of being a parent; watching your kids grow, mature and become more independent. Sure, she's grown, but she really hasn't matured at all since she was about 4 years old. To accurately describe my feelings, it's like my baby is trapped somewhere and can't find her way out, and I can't find her either.

Hopefully we are that much closer to the keys which will unlock her prison.

With love,
The Schulz's

First OT Goal: Brushing Teeth - Conquered!!

Mykaya has been doing so good with brushing her teeth! It used to be a battle to even get her in the bathroom to brush them because she had such a hard time. Then usually I would end up brushing them for her because we both would be frustrated. Brandi, her OT, just had 3 sessions devoted to toothbrushing and she now goes into the bathroom and does it all on her own with just a verbal cue! We have a visual chart hung up on the mirror front and center that has pictures and words to go step by step through it. Because of the amazing difference this has made for Mykaya, we will probably be implementing the same idea into her learning plan. So exciting! We found something that works :) Love OT!

Mykaya tries so hard; I'm glad she is finally getting to reap the rewards of her efforts and she can (hopefully) see the light at the end of the tunnel like we can. :)

Next goal on the agenda: showering/bathing!

With love,
The Schulz's

School Meeting

Yesterday we sat down with an entire room full of academic professionals from Mykaya's school to discuss her learning program. There was Jeremy and I, Mrs. Jahner, Mr. Olson (the principal), learning disability coordinator, autism resource specialist, speech therapist, occupational therapist, school psychologist, school counselor, school social worker, special education team leader, and a few others that I can't remember right now. How awesome is that? All of these people came together as a team for my daughter. Mykaya Noelle Schulz. I was in awe.

We discussed what has been done so far (testing, therapies, etc) and what we should add on. Something completely out of left field came up during the meeting that I had not even thought about. The school psychologist was talking about how Mykaya's level of awareness and functioning seems to change daily. Sometimes she will function completely normal and then other days she can't perform simple tasks or answer simple questions. This has always puzzled everyone that has worked with Mykaya. She brought up the possibility of diabetes as being a reason. She said maybe her blood sugar is low on her poorly functioning days and normal on her "normal" days. That is definitely something I had never thought about. Diabetes does run heavily in Jeremy's family and my paternal grandfather has it as well. So we will definitely be discussing that with her doctor.

The school will be performing several more assessments and also having us fill out (more) assessments to get a really good picture of where we're at right now. Her MAP scores (all 2nd graders were tested about a month ago) came back as follows:

Math scores at the 1 percentile

Reading scores at the 2 percentile

Spelling scores 83/80 (superior range)

The funny thing is that she reads at a very high level. She has library day on Monday and she consistently brings home chapter books that I would guess are at a 5th or 6th grade level. She enjoys reading those books and can tell me everything about them. But give her a book more at 2nd grade level and she has no comprehension of it. Can't even tell you the characters in the story. We brainstormed at the meeting that maybe she's bored at her grade level reading and chooses to not pay attention to those stories. Either way, I was shocked to see that reading score.

The math score I was prepared for. She has modified schoolwork which she receives one-on-one assistance from her teacher on. She struggles with simple addition/subtraction of numbers 0-9 and has no concept of money or telling time.  We have been working on all of these things since KINDERGARTEN. Yet, every day is a new day for her, it seems. I feel like I am on a hamster-wheel with her schoolwork. We have spent 2 hours a night on homework since she was in first grade, just trying to "teach her math". Nothing works. We've tried EVERYTHING. Luckily, Mrs. Jahner doesn't require her to turn in any homework right now. She works on math in school and that's it, until we can figure out what we're going to do. 

I am so very grateful to all of the academic experts at Northridge, who really do have Mykaya's interests at heart. They care enough to listen to our concerns, and have the appropriate people involved to get us where we need to be.

With love,

The Schulz's 

Mrs. Jahner

I have been wanting to go to the girls' school to help out in Kaya's classroom on one of my (few and far between) days off. Have I mentioned how much we ADORE Mykaya's teacher, Mrs. Jahner? Nope, don't think I have. There is no way I could ever put into words how amazing she is. She is the most patient, kind, loving, genuinely sweet person I have ever met and somehow we got the amazing fortune of crossing paths with her! She has been one of the people I look forward to talking to each day (yep, I said EVERY day!) since we moved here to ol' Bismarck.  We email our thoughts, feedback, plans and general classroom stuff back and forth several times a day. How she has the time to do this, while teaching a class of 22 seven-year-olds is beyond me. But she takes the time, because I think she knows how much it means to me.

Aside from that, Mykaya has latched onto her like a second mother. She doesn't bond with very many people due to her social deficits, especially teachers, mostly because of her experience with some fairly incompassionate ones she's had in the past. Her last 2nd grade teacher actually told me she thought Mykaya was manipulative (!) and "knows how to get the adults in her life to do everything for her." Do you know what the saddest part about that is? Until I met Mrs. Jahner and started going through this whole process, a tiny part of me believed her. I have this whole guilt thing where I think that somehow, everything I have done has been wrong and I have somehow caused her to be the way she is. So I thought for a while about how maybe I do do too much for her. Maybe I need to step back and make her try harder. Yeah, all that does is lead to more frustration, tears, anger, defiance and GUILT. She really really really wants to be able to do things on her own, she just can't. Yes, I realize this now.

I plan to spend as much time as I can helping out in the classroom, so I can get a feel for what she's excelling at, how Mrs. Jahner succeeds in helping her (so I can model that at home for homework time), and also to pay Mrs. Jahner back for all she's done for me.

Hey, it saves her from emailing me too, because I'll be right there with her!

With love,
The Schulz's

The Power of Ice Cream

Yesterday Mykaya had to get a shot. We have been working up to this day for the last several weeks. Yes, I said several weeks. When we moved to the new school, we found out that Mykaya is behind on one of her chickenpox vaccines. Oops.

My first reaction to the news was, oh ok no big deal. She's old enough now that it won't be a big deal. I had just taken Laney in October for 4 shots and yeah it's no fun, but she was pretty cool with it. A few tears, then stickers and hugs saved the day, and she forgot all about it. And she's only 5 so Mykaya should be just fine with it right?

Then I remembered that we went to the hospital in November with Mykaya to get an MRI of her brain. There had been some pre-seizure activity on a sleep-deprived EEG so we wanted to rule out anything tumorish in there. That day was the single worst day of our lives. We got good news, but getting there was absolute HELL. For all parties involved. Well, except Laney, she just drove a little car around the waiting room for hours with my mom and sister. :)

The hospital itself was scary.

Getting weighed and vitals taken was scary.

The room was scary.

The anticipation of what are they gonna do was scary.

For Mykaya, that is.

And when things are scary for her, she doesn't respond like a typical child. She cries and she shakes and she rocks back and forth in the chair and she shuts down COMPLETELY. Hugs don't work, candy and stickers don't work. The promise of ice cream doesn't even work. Nothing works. You are stuck in this awful horrible nightmare with your child and you can't help her. 

The nurse brought in a child life specialist who gave her some clay and after a few minutes she started to play with the clay, and then she started to tell the lady why she was scared. So the gal showed her what the IV would look like (minus the needle) and let her play with it and all that. She was better, but still very very scared. Then they put some cream on her arms to numb them for the poke and gave her some "happy juice" to drink (I think it was Versed). Once that stuff kicked in, a completely new kid emerged. It was like her bonds were broken and she was totally free. She laughed and played and sang and smiled and LIVED without worry.  She got to live in a typical child's world for a few hours. It was at that point that I started to think about daily medication for her, but that's a topic for another day.

That memory came flooding back to me and I thought oh great. How am I gonna get her through this again? I know that she responds much better with TONS of preparation. If preparation is what she needs, that's what we'll do. So I took her to the lab with me when I needed some blood drawn. I took her into the room and let her watch everything. I told her she didn't have to look when they poked me, but she wanted to and she was fascinated. She couldn't believe that I didn't freak out. We talked about it for a long time and she kept saying "if I don't move, it won't hurt. Mom didn't move and it didn't hurt". I had to tell her it still be like a beesting but that would be it. I got her to the point after many many many discussions where she was actually excited to get her shot. Up until we got into the room yesterday.

Then she went all sorts of ballistic. She curled up in a ball and tried to hide in the corner. I had told the nurse she has Aspergers right away and she nodded and goes "ok thanks alot for telling me". I couldn't get her out of the corner, but I finally got her coat off. I had told her she could pick which arm to get the shot in, but when it came down to it, I told the lady just get it where you can. So she cleaned it off and Mykaya was still fighting and screaming and crying, while at the same time saying "I'm sorry I'm so sorry Mom". At one point I looked at the nurse and said I don't think I'm strong enough to hold her down (she weighs 72 lbs and I weigh 130). As soon as the nurse said she would have to bring somebody in to help, Mykaya goes ok just do it (still struggling, crying and screaming). So we did it. She held still for the poke but kept screaming. After it was all done, I cradled her like a baby for a long time and just let her cry. I told her she was very brave and she kept saying I know but I cried. I told her it was ok to cry. So she did.

Then we went to pick Laney up from the Y and met dad for ice cream at Cold Stone! This time, ice cream did make it all better :)

With love,
The Schulz's

One Step at a Time

Today is our second day of Occupational Therapy (OT).  At Mykaya's OT evaluation last week, we found out that her ADL (Activities of Daily Living) skills are over 3 years behind. She is 7, so that means she is trying to function with a 4 year old's motor skills. She has poor handwriting which causes stress at school, she can't brush her own teeth or hair, she needs help to wash herself in the shower and wipe herself after using the bathroom, she can't lace or tie her own shoes, she can't ride a bike without training wheels, and she can't use a fork correctly, let alone a butter knife. She can, however, make you not notice ANY of those things when you are around her. Mykaya is a gorgeous, friendly, happy, independent young girl who will do anything for you, even if she barely knows you. She is very well behaved and will do anything you ask her to do with a positive attitude (most of the time).

Because I know and love the girl described in those last 3 sentences and I see Mykaya through a mother's heart, seeing in black and white just how far behind she is absolutely crushed me. You see, I have lived with my daughter her whole life and I'm used to the way that she does things. They are done the way Mykaya does them. I never saw a problem with it. Call me naive but I had no idea she was that far behind. Comparing her to 5 year old Laney turned on a lightbulb for me, but it's hard to know, is Kaya that far behind, or is Laney just that far ahead? I guess we have our answer now.

I have a lot of hope for Mykaya; she is getting all the help she could ever need with her school, therapy, a strong family behind her, and an array of activities/gatherings planned for her. But the main thing Mykaya has going for her is her attitude. She never gives up and I know without a doubt that she will catch up to her peers.

ONE STEP AT A TIME

With love,
The Schulz's