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
Thursday, February 24, 2011
Wednesday, February 23, 2011
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
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
Tuesday, February 22, 2011
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
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
Monday, February 21, 2011
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
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
Wednesday, February 16, 2011
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:
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
Tuesday, February 15, 2011
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
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
Saturday, February 12, 2011
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. :)
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
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
Thursday, February 10, 2011
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
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
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