It is Possible to Feel Thankful, Happy, Proud& Sad all at Once

Today I met with Maizie's teachers to discuss how she is doing. I continue to be blown away with the staff. They seem to "get" Maizie and are working on goals that make total sense. For the first time ever Maizie wants to go to school. She is happy and I am so proud of her!

Before I was even able to bring up Maizie's recent "attitude" the teachers began talking to me about how they were handling her "tude" at school. Every time I looked at my list they were already bringing up the issue and easing my concerns, communicating ideas that made sense. This is certainly a new experience for me. Typically, I would attend meetings like this carrying notebooks, reports from doctors and written requests, etc. Preparation for the meetings took me hours and left me exhausted. Today I just showed up with my little list of questions and concerns. Within thirty minutes the meeting was done.

I requested more attention be placed on math skills and everyone agreed, notes were written down and I totally trust that within a day or two they will be working on more math with Maizie. They are writing up a plan to help Maizie become more independent with her medications and shared their ideas with me. Once I agree to the written plan and sign it they will begin working with her on taking her medications.

Of course all of these goals transfer to home as well. We need to stop doing so many things for Maizie and help her learn these skills. I continue to work with Maizie on some homeschooling since a lot of her day program is not addressing academics. I told the staff that I thought Maizie was losing academic skills even though we try to keep her working on them at home as well. This moved into the area of Maizie's memory which varies from day to day. I felt myself get a bit blurry eyed and choking back the tears when this topic came up. I don't often find myself feeling emotional at these meetings. I think I was so amazed that these people were understanding Maizie and in total agreement with my concerns and even added some of their own. I still feel in a state of shock from it all.

The most emotional part is hearing the staff say something like this,"We want Maizie to be as independent as possible. Would you agree that Maizie will probably be on a few medications for her entire life, for her various health problems? Yes...we think so too. So, it is very important that we help her be as independent as possible. Of course, she will always need someone to help her count out the medications and handle refills and things like that. But, we would like her to get used to handling the pills herself and making sure she knows how to read the labels and take the medication on her own." No one has ever talked to me about Maizie needing medications her entire life, yet alone that she would always require someone to assist her with them. Yes, I think about this but it is less real until you hear someone else say it. Does that make sense?

Or when they say something like this when I express my concern in regards to academics, "I think we can all agree that it is more important right now that Maizie learn basic math, reading and language skills rather than science and history. That is not to say that we don't want her to learn those things but since she is having a hard time with even the most basic learning and memory skills we feel it is very important to focus on those areas before working on higher academics." I know this. I really do. But, as a mom it is so hard to admit that Maizie still can't repeat a simple message upon hearing it. It is hard for me to accept that her memory and processing skills are still that of a preschooler. Her previous schools pushed her forward despite her never learning even the most basic skills. Obviously, that does not work long term.

I almost passed out when they said something like this in regards to our long term goal, "Eventually, in a year or so our goal would be that Maizie may attend a private (Catholic, Lutheran, etc.) school where we have had good placements. These schools are more open to one to one aides when needed and reduced school schedules. Maizie will have a very hard time fitting into a regular classroom because academically she is years behind. A special needs classroom is not acceptable because she is more advanced than what you would find in those classrooms. We will work towards her attending a private school...possibly....a couple half days a week."

I sat there stunned. Never before have teachers talked to me like this. Usually I heard this, "We think Maizie is doing just fine. She is a quiet, darling little girl and she tries hard to please her teachers. We would like to mainstream Maizie and use the resource room for ISTEP skills. Here is the schedule (insert schedule from hell moving from room to room to room, from teacher to teacher to teacher)." I sigh and begin to advocate like a lawyer, trying to prove that my daughter needs an aide if she is to be in a main stream classroom and that she is not at the age level they insist she is at.....on and on and on and on.

So tonight I sit her stunned, thankful and yet sad. It is a mixture of emotions that I imagine other parents of special needs children feel. I want to celebrate this new found school and at the same time I live in fear we will lose it, leaving me, Joe and Maizie beyond devastated. I suppose that is normal considering we have spent so long in search of a school for Maizie. Our insurance is being a pain about it. We already owe six grand! Insurance keeps losing the claim, saying the claim code is wrong, that it was mailed to the wrong address and blah blah blah. It is enough to send me over the edge. For once I just want to know that she will be in the same school for at least a good year. Two would be even better.

New Day School & New Braces Make for a Spookily Tough Week

Nothing has been easy these last few days.

Within just a few days the Autism Center has told us so much of what we already know concerning Maizie. This is a relief. We had our first meeting where they explained areas they want to help Maizie with. That was a first. Normally, I would go to the public school IEP meetings with a prepared list of what Maizie needed help with. The school would rarely back me up on the plan. I would then take her for assessments with neurologists, psychologists, physical and occupational therapists and give their written recommendations to the school. After that, they were willing to provide needed services. If you can call it that? Not much was provided in our recent community. As many of you know the process is exhausting and was a major reason for choosing homeschooling. It has only been a few days but right now I am very impressed with the center.

The transition from homeschooling to the center has been exhausting for Maizie and me. She loves the place and is excited to attend. However, she comes home exhausted. Once home she begins to cry and yell at me for up to an hour or two. She moves the kitchen chairs around and is pretty much incoherent. We have seen this before which makes it easier to deal with. And yet, it seems to be causing me to spiral into post traumatic stress disorder since it has been so long that she has had cried and yelled like this. Not to mention it brings up my fears of the program not working for her. I remind myself this is expected the first week or even the first month.

This happens due to exhaustion and the total newness of everything involved. To top it all off this was the week she was scheduled to get the braces and expander on. That alone has been very difficult for her.

Yesterday she held very still while the nurse put on the braces. It took an hour and a half. Maizie did great. She holds a little too still. I watch as she holds her hands in the air or keeps then just above the chair she is on, floating in the air. Relaxing even just a bit is very difficult for her. Once they moved on to put in the expander she melted. Tears streaming down her cheeks. It was tough. The nurse decided it was best to do the expander today and I agreed with that. On the way to school after the braces were put on yesterday a bottom bracket just popped off. We had to turn around and have the bottom row taken off and fixed today. What a mess. I thought that was going to send Maizie over the edge but she took it all in stride.

Maizie's anxiety has been severe. She is not sleeping much...waking up at about three and proceeding to play, eat and make a real mess of her room and the living room. I check on her every so often and encourage sleep but time has taught me that fighting with her will not help matters. If she can not sleep, she won't. So today she went to school with sleepy eyes, a sore mouth and difficulty talking from the expander. With lack of sleep comes CVS bouts so I am keeping my fingers crossed.

Maizie said, "Mom. I can't talk anymore. I sound bad." Suddenly, Maizie went from fluent speech to sounding like she has a major lisp. She continued by crying, "Mom! I think I am going to be a different person now." Sigh.

Explaining all of this to her is exhausting. Just when I think she is understanding why she needs the expander she will say something like, "I will never be able to eat food again. I can't take this!" Learning to eat with the expander has been harder than I anticipated. She is having difficulty using a straw for ice cream shakes and managed to mush about a tablespoon of soft turkey up into the expander. I used the little tool they provided to dig it out as she cried and gagged. It was not pretty. While I was doing that I kept thinking, "Why did we agree to these braces?" But then I remembered we really don't have an alternative. Those teeth have to come down.

After each orthodontic session Maizie hugs me and sobs into my shoulder for the longest time. I am pleased with how kind and patient everyone at the office is with Maizie. The office is totally decked out for Halloween and she loves that. Notice the skeleton wearing braces above found in their yard outside. Very cute.

Tonight there has been no melt down. She is too exhausted. We had to go back to the orthodontist again this evening because she was pushing with her fingers on one of the end wires and cutting into her lip badly. Pushing on her teeth has been a habit of hers for a few months now. I think after our visit tonight she will be moving on to a new habit that does not involve her braces. Or at least I am praying she does.

Thanks again for all of your positive and encouraging comments. You all keep me going on those days when I just wanna curl up and go back to bed.

Maizie's First Day at the Autism Center

Wahoo! Can you see the excitement in Maizie's face? Today was her first day at the Autism Center. The first day was short. She decorated her cubicle with a few Jonas Brothers posters, arranged her books and played some games with a few new friends.I took the ol' first day of school photo. Maizie cooperated for the first shot and then began chasing me. Notice the large back pack she picked out. She filled it with her lunch box, a Webkinz and a some knick knacks from her room. I am happy to say that Maizie was told to bring anything that would help her feel comfortable. I love this shot because you can see how ecstatic she is. School today did not begin until three thirty so she was antsy all day. Finally, I took her shopping for new school clothes. A great way to pass the time.

Her normal hours will begin around noon. Wonderful! This gives her plenty of time for her morning rest. If she has a CVS episode we won't end up missing school since they typically occur in the morning. To celebrate the first day we went out to dinner at Maizie's favorite Chinese restaurant. Once home she spent some time with the guinea pigs Salem and Zebra. Yes...those are cute lil' gingham dresses the guinea pigs are wearing. We purchased them for Louie's (Chloe's guinea pig) Birthday Party! Chloe & Susie are planning a kicking party. Zebra and Salem want to look their best.

Touring the Children's Autism Center

This morning Maizie had a CVS bout. She was sitting watching cartoons and I was eating a bowl of cereal when all of a sudden she curls up into a ball and says, "My belly hurts." She begins sweating and asks for her sick bear bowl. It was a bad one.

I woke up Joe and told him Maizie was having an episode. It had been quite a few days since the last one so as always we were both holding out hope that there would be no more. You can't help it. These thoughts just take over and we think,"Maybe she has outgrown it. Maybe they will stay away all summer."

I set Maizie up with her belly cozy and head off to an important morning meeting.

I went to tour our towns relatively new Children's Autism Center. They have been open for two years. Oh, how I wish they would have been around when Maizie was younger. And yet, we managed and Maizie is doing quite well. There are some areas where we need help. Despite trying many different teaching methods we have been unable to help her understand the passing of time, basic math skills, hand writing skills and various self care skills. Behaviorally she is doing quite well. I am sure we would see some behaviors develop with the stress of adding in therapies. They help in that area too. One day at a time.

I have been wanting to tour this place for months but resisted since Maizie has been so sick with CVS. This week I took the leap, made the calls, scheduled the meeting and completed the paper work. I could barely sleep last night anticipating the meeting and trying to breathe from this nightmare sinus infection/cold. My biggest worries being, "What if they won't help us? What if Maizie can't stay well enough to go?"

Then, to wake up and see Maizie struggle with another episode about sent me over the edge. My heart broke.

The meeting went great. The place is clean, organized, professional and the people there were all very kind. They only use positive methods and won't do time outs unless you sign off for them. I was very pleased to hear this.

Maizie will have her initial testing soon to see what areas she needs help in. The best news of all....our insurance will cover it one hundred percent. God willing, that is true. I never trust what the insurance company tells me until the bills go through and they are covered. It is good and supportive news though! Yes! Now, I have to chill and think good thoughts. I can't imagine why she would not qualify for services and yet I worry they will say she is too "high functioning" or that her CVS would cause too many difficulties. My mind runs away with negative thoughts. Now that I know we may be getting some quality help I am a nervous wreck waiting for the answers.

I told Maizie about the Autism Center and she said, "I am not Autistic! I mean...I am...but I don't want math." The brochure had a large drawing of a few addition problems. Next, she closed the brochure and said, "Cool. Fine." and threw it back on the table. I explained we would still be homeschooling and that pleased her.

This would be a big change for her. Luckily, the hours are flexible. She would probably begin with three hours in the afternoon and build from there. Since she has not been tested in quite a few years I am very interested in seeing the results and what the center would offer for help.

Keeping my fingers and toes crossed. The photos in this post are from 2004 and 2005.