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.

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.

Thoughts on Labeling

When Maizie was a baby and we knew she was not feeling well I remember thinking, "If we just knew what it was. A name. If we had the name of it everything will fall into place. There will be answers. There will be things we can do, things to change, ways to make everything better."

Once we had a "label" I always felt hopeful. I knew that information was power and with it I felt powerful. Over time the first label was not fitting, and then the second, the third, the fourth, etc.

With each label I read books, I studied, I taught others, I interviewed doctors and professionals, I looked for the best help we could find.

Each time...nothing changed. What was I expecting to change? Did I want Maizie to be "normal"? Sure we had medications to try, therapies and behavioral strategies. What exactly was it we were looking for? We were searching for answers to help Maizie feel better. That much I knew for sure. I wanted her to be able to play, to speak, to answer questions, to laugh and run and play. Making it through a day without being in pain was certainly something I wanted for her. I wanted her to have a childhood like I had.

Whatever label we had did grant us a certain power of sorts. It led us to a certain doctor who would in turn give us ideas or medications to help Maizie. Some of the medications helped and some did not. At times there were the doctors who knew nothing, who caused more trauma and damage than I could have foreseen.

All of this I never wanted to put Maizie through. I never wanted to put Joe and me through it. But, it was that way. I can't see it going any differently. The searching, the sleepless nights, watching Maizie in pain physically and emotionally for hours...for days. How can a parent watch that and not search? It is impossible.

And yet. When it gets right down to it...Maizie is just Maizie. She can not be categorized. One can not say, "See! She is just like this child here or that one there. Do what we did for this child and it will help her exactly the same!" Like everyone else in this world Maizie is her own person despite her diagnosis. What works for one child or adult may not work for another.

Maizie's medications don't change who she is. They are not some miracle potion that make her find her words, stop her anxiety, insomnia, migraines and inability to withstand certain noises or situations go away. Her medications are a tool. A tool that must be researched, reexamined and thoroughly evaluated on an ongoing basis.

Maizie is not her medication. She is simply Maizie. A child who is simply that. A child.

I continue to question the labels we use. She needed a label in order to get schooling where she is taught using alternative methods. Labels that determine the correct medications to treat her pain are very important. A label was necessary for her to get proper care in the hospital when the nurses insisted she could withstand having a roommate when it was beyond clear that she could not. I could go on and on. Our lives revolve around these labels. I have fought for these labels and I fight for others to see beyond them.

We rely on labels to move forward. And yet every day I am with Maizie it becomes more clear to me that yes, we rely on these words, these categorizations for help...but she is not at all what they define. Maizie is Maizie. My daughter. A child.

We are a world full of people wanting to put everyone else in a category, a slot, a box. People say, "Oh, if we can just get this one part of this child under control....if we can just figure out what makes this one tick like that when I want so badly for her to tick like this...why can't she be more like this or like that? Maybe if we call it that or this we can make it stop. Maybe we can change her to be more like that child or more like me?"

A label...is a label....is a label. My child has a whole list of her intended labels floating around on charts, graphs, medication bottles and IEP's.

The world wants to squeeze her into a box. Make her fit in. Push her this way and that. I just want her to be a kid. And yet, there they are...the labels. Our society is obsessed with them. I certainly have been as well.Maizie is big into the classification of flowers. She carries a book with her wherever we go. If we cannot find a particular weed or flower in the book she makes me search endlessly for it online. She says, "Keep looking mom. Don't give up. I know you can find it. This flower has to match something."

I took these photos as Maizie was diligently trying to classify a dead Black-Eyed Susan she had picked for me. You can see it all wilted in the background. Once she found it she said, "Yes! It fits in right here. See....this flower is just like that one. It has a match. Did you know that mom?"

Immediately when she said that I was struck with how a flower can be categorized, drawn and labeled. It has a place where it fits, where it grows and it needs a certain amount of water and sun. The list seems so easy. The labels so fitting.

This is not so for my Maizie. Her labels don't define her. They say little about who she is. Bits and pieces may seem fitting.

Finally, I don't seek out labels anymore and I accept that current labels say very little about who she is.

New labels change nothing.
Josephine Lawrence, Let Us Consider One Another (1945)

Interview on Growing Up, Autism and Other Things with Anne C of Existence is Wonderful

Anne C's blog Existence is Wonderful is one of my favorites even though I sometimes have a hard time understanding Anne's science fictiony posts. My mind has a hard time with anything in that realm. I had never even seen Star Wars until we moved to Jersey.

Like me, Anne is an artist. She is also an engineer and a writer. Anne is also Autistic, like Maizie. We have a lot in common and I am so proud to have a growing friendship with Anne.

Through reading, commenting on her blog and asking Anne questions I have learned more about what it is like growing up Autistic and being an adult with Autism than is possible from any book. Anne has given me excellent advice for teaching Maizie math, the passing of time and valuable insight into how communication might work for Maizie.

I ended up interviewing Anne to get an even greater understanding of her incredible story. I spent a great deal of time narrowing down my questions. It was difficult because I have so many things I want to ask her and she has a great deal to share.

Anne answered them and I devoured her writing in one sitting. Her answers were long and yet I would have hated to edit them. Every word she wrote served a purpose and I did not want to tweak them in any way. I found myself nodding yes, laughing, smiling, talking out loud and at one point tearing up. I am so excited for you to read Anne's interview.

Because of the personal nature of Anne's answers we decided it was best published on Anne's personal blog rather than mine. She has included beautiful photos at my gentle insistence.

I firmly believe that the best way to learn about Autism and various other disabilities is directly from children and adults who have "been there" and "are there". The knowledge Anne shares is beyond valuable.

Here are the links to each part. Enjoy and please comment!
Interview on Growing Up, Autism, and Other Things - Part I

Part II

Part III

La De Da Days of Triggers, Dog Photography and Shopping

I have the best bunch of readers. Your comments always keep me moving forward. Lately I really need that since we have been home bound. Thank you.

Maizie has refused to leave the house for three days. The good news is her migraines seem to have slowed considerably. We began Topomax on Monday and she has yet to have a migraine since then! I am thankful! Instead her anxiety is high and she is playing it safe by avoiding everything she thinks is a trigger. Currently this list includes the following...

*Mexican Restaurants (the smell) or any other restaurant
*Anywhere there may be a crowd (I tried to bribe her with a trip to The Dollar Store and Build A Bear..both were turned down due to this)
*Unhealthy Food (She has yet to admit that Happy Meals are unhealthy)
*Anywhere with Fluorescent Lighting
*The Sun

Lovely. Such is life. Joe and I were picking at one another tonight due to being stuck in the house. Joe works in our creepy dungeon like basement all day talking with people all around the world. I get mad because I feel like he at least has the advantage of reaching goals, talking to people and I even hear him laughing now and then. I on the other hand spend my time talking to Maizie, the dogs and the guinea pigs. I am not a phone person. I never have been. I am reconsidering this. Possibly, I need to devote more time during the day talking to friends on the phone. The bottom line is all three of us are in this house 24/7...together...all the time...never leaving...always hearing and seeing one another. A blessing and yet....ahhhhhhhhhhh! Anyway, we both moved on from our little spat and the night is looking better.

I certainly need some new goals. But what? Tonight I left to run my first errands of the week. First I went to The Dollar Tree to pick up some cheap workbooks and puzzles for Maizie. After that I went to Pet Smart to get two harnesses and a coupler for our dogs. The collars we have sometimes pop off during walks. This is terrifying when you live on a busy street. Once home I put the harnesses on the dogs and took off for a walk. The halters are the best purchase I have made in ages. Both dogs seemed very comfortable and they did not pull any more than normal. Now, I have no excuse not to be walking the dogs daily. Getting back in shape sounds wonderful. I am still not back to my ol' self after my hysterectomy. Walking should work wonders.

Tonight Maizie and I took some photos of the dogs for Saint Patrick's Day. This is usually exhausting (due to uncooperative doggies) but lots of fun and laughs. Here is one of the photos of Stella protesting. If you want to see more go HERE. I also want to remind you all that Maizie has blogged a few posts recently. She would love it if you stopped by. Like me, Maizie loves getting comments. The last thing I will blab about tonight is a purchase I made last night on line at Southpaw Enterprises. We have been using this company for years for many of Maizie's sensory and educational needs. This year they came out with a new clock that has a place next to it for a picture card. We are going to make a small laminated list for the different parts of the day. I think it will help her learn the passing of time.
I also bought her some fidget pencils since her latest obsession is licking the pencil lead and rubbing it between her fingers nervously. Surely she rather play with the cool fidgets on top of the pencils.
My final purchase was a book on tying shoes. Maizie wants to learn how to tie shoes more than anything. It seems more is required in teaching this than just the typical bunny ear method. This book is supposed to help children with special needs master this skill. Since Maizie's shoes have special inserts and no longer come in Velcro we are hoping this book teaches us how to teach her to tie her own shoes. I am keeping my fingers crossed.

Advocating in School for the "Super Smart" Kid

This week I had the pleasure of helping my sister advocate for her teenage son who is going through a difficult time in school. He went from an A plus student in advanced classes to several failing grades. He is known as the "Super Smart/Funny" kid. This transition to failing seemed to happen in less than a few months. Depression and anxiety has become a serious problem for my nephew making school quite a challenge.

My nephew is a great kid and I feel very positive that he will be able to turn around his grades. Some assistance in helping him get them back up is needed. Almost all of his teachers attended the meeting. All were positive and genuinely like my nephew and want him to succeed.

When we first arrived it seemed like an IEP meeting. All of the teachers took turns saying a few positive things about my nephew followed by the more troubling areas of concern. My sister took it all in stride and was quite composed. I was very impressed since many parents crumble at that part of the meeting. Tears fly and tension rises. My sister took it all in and was ready to develop a plan of action.

After hearing all of the concerning news the teachers developed a plan for monitoring homework and a strategy was developed to help my nephew cope with catching up. The teachers are all aware of his struggles with depression and anxiety and were more than willing to cut him some slack. Part of the problem was that they had been giving him ample opportunities to bring up his grades and he was still floundering.

At home measures were taken to remove distractions and monitor homework more closely. Everyone seems to be working together as one big cohesive team. It seems like we will have a happily ever after ending. My nephew has never struggled like this in school before and when he attended the second half of the meeting he seemed to understand what needed to be done and was willing to try and meet the expectations. At least that is what we are praying for.

All of the teachers were in agreement that he had the ability to do the work but his anxiety and depression were making things much more difficult for him. He is getting help from a doctor and counselor so all should be on the up and up soon.

This had me remembering the many IEP meetings I have been to for Maizie and several other children with special needs. None of them ever went as smoothly as this meeting for my nephew. I did not get the feeling that any of the teachers were trying to hide anything or were resisting what needed to be done to help him.

In my IEP's for Maizie and other kids the tension was usually much greater, the red tape intense. I suppose months or years of struggle lead to tension. It makes sense. A child's inability to learn and cope increases the stress of the meeting. Even the best team of support will eventually become frustrated and begin to point blame.

My nephew's situation was "fresh"...a new phenomenon for him and his teachers. But, if it continues what will happen? We all know what difficulties depression and anxiety can bring to a child's schooling experience. A bright, exceptionally intelligent student can become left behind and teachers grow tired...sometimes they give up. Would he become a child whose outlook from teachers’ changes? Does knowing that a child has the capacity to learn and succeed above his grade level put them at an advantage or disadvantage when things go wrong?

Back when I was in school I remember thinking that the kids in the higher level classes (AP) had more advantages. They seemed to be treated with more respect. The teachers seemed to look upon them as the "better" students to teach. Interesting field trips were aplenty and opportunities were given from teachers who actually seemed excited to be educating them.

I wish that all students were given the respect and team mentality that I witnessed this week. In my experience it does not usually work the same for children with disabilities. Parents are questioned and blamed, teachers are questioned and blamed...the atmosphere is different and pressured. Funding, rules and expectations are all involved...things get heated. I consider myself to be a very positive and team focused advocate. I work with the schools in a positive way and that always has its advantages. But, even still...when your child has a disability from early on...well...it is just not the same. In many situations people don't know what to do to help the child. Expectations are either too high or way too low.

With my nephew who is not in special education people seemed willing to bend over backwards and make things happen...fast. They have high expectations but they are fair. Oh, how I wish that could have been my overall experience with Maizie. Even in the best schools I had to defend, prove, make a case, study test scores, observe, and the list goes on.

Expectations set for Maizie were sometimes so low that I would struggle to prove her skills and at other times the expectations were so high I had to prove her lack of skills. It was exhausting.

I did go in prepared for this meeting with a list of questions, read the teacher's websites, read over the homework assignments and wrote a follow up letter to my nephews meeting. You just never know where a situation like this could lead and I want to be ready to advocate for him again if it is needed.

Part of me thinks all will be well. Another part worries about ongoing anxiety/depression and the toll that can take on a kid. When does a top student become a student with special needs? So far the school is treating his situation as requiring support. I am very glad for that. But...will that support change if those needs become,"special"? It is very interesting for me to think about.

Obsessing Again....

I can tell when I begin to get down because so many of my posts are about Maizie's health and schooling. Hopefully things will take a turn for the better here soon. We had another morning where Maizie was not feeling well and was bothered by lights and noise. She ended up falling back to sleep about nine thirty and woke up again around eleven thirty. She ate breakfast but spends most of the morning looking pale and limp. Lately, it is just getting really hard to watch every day. I want her to feel good!

Her moods are a bit more explosive here in the last week so that wears on me. She has not been talking about "regular" school today so that was a relief. She was very angry tonight and hid behind the shower curtain for quite a while. I do have a meeting with the special education director of a school on Friday. She has a daughter who is homeschooling her special needs son. I am hoping to get her phone number and set up a time to meet. Apparently they are very active in a homeschool group so I am looking forward to find out which one it is.

I am also going to talk to the director about how they integrate a child like Maizie into the school. I don't have a problem with full inclusion but I do if it means Maizie would spend most of her time in a fourth grade classroom understanding little to nothing. I just don't see how that would be of benefit to her. They seem open to something part time but once again, what would she be doing in the class? It would be one teacher to twenty five students.

If that meeting is a bust then I will probably call Maizie's old school and discuss the possibility of part time schooling there. We may decide it would not be best for Maizie considering her ongoing health struggles. At least at her old school there is a class for special needs children with two teachers and just eight students. Possibly on a part time basis things would go better. I am looking into this on a research basis...possibly for Fall depending on what all happens health wise.

Joe and I decided that the most important thing right now is to find a homeschool group we would like to be a part of and join in with more activities. Someone mentioned Girl Scouts and I am going to call about that too.

Last night I could not sleep at all. I was obsessing over everything we have coming up for Maizie, worrying about her health and her increased moodiness. Do you ever have nights like that where you just keep telling your brain to shut up but it won't. I came back down from trying to sleep to talk about the school issues and frustrations with Joe. That helped and I finally fell asleep.

I have come to one conclusion. I am being very hard on myself. I only recently had a hysterectomy. It takes at least a year to feel totally like your self again, hopefully an improved self minus lots of pain. Our first homeschooling year has been less than normal considering that surgery. Maizie has at least one to two seizures a week and she seems extra tired after they happen making us plan less outings. We have had to cancel a lot of things so I think after a while I gave up.

I am being hard on myself for not doing more with Maizie and then I realized it is only recently that I have had more energy to do more activities and Maizie seems to have less and less energy. I will try and take it one day at a time, realizing that I don't need to get everything going all at once. Finishing all of this testing for Maizie will hopefully give us some answers and options to help her feel better. I want to post about happy things and fun times but I just don't have it in me this week. Argh. Hopefully I will wake up tomorrow and Maizie will be feeling good. We have our Coffee Break with our church tomorrow and I am really hoping we can attend.

Homeschool vs. Regular Schooling

Maizie is hyper as all get out tonight. She knows we begin homeschooling tomorrow. Even though we keep a very loose schedule Maizie seems excited and nervous. At the same time her attitude is not the greatest. However, she did insist on going to bed with a pile of worksheets to complete. Maizie is very into learning on her own. Most of the time I feel like we work in an "unschooled" fashion.

We had some discussion today about homeschooling versus "regular" school. Maizie told me there were a few reasons why she does not like "regular" school. This is new for her to communicate. Usually she would only cry about missing her previous teacher. Here is her list.

* I don't like the noise.
* I don't like kids asking me questions and being loud to me.
* I don't like the teacher making me go to the reading table. At the reading table I am there because I am loud and it makes me mad.
* I am loud because the kids talk loud and I talk loud and then I get in trouble.
* I get mad when the teacher makes me write on the chalk board.
* I don't like the noise of the teacher and her mean voice. (I don't think the teacher has a mean voice but it may be interpreted as such by Maizie...we have this same problem at church and with certain friends)

This is the most Maizie has ever told me about what she does not like about school. I asked her if she would like to go to regular school part time and she began to cry and said something like this,"Not the same school I was at before. I have to be the new kid at a school. I will only go if I am in second, third, sixth or tenth grade. I don't want the kids to talk to me and I don't want noise. I want regular school if this can be the deal."

Well, that does not sound too easy to write into an IEP. We talked about how children talk and part of making friends is talking. She went on to say she did not like homeschooling and she did not like regular school either. To top it all off she told me how she does not want to do any more math at tutoring.

Do I regret having this conversation? Yes and no. I am glad she can put her school dislikes into words. This tells me that if and when she is ready to return to regular school she may be able to better communicate her needs, difficulties and work with a teacher to solve problems rather than melting down, running out of the classroom or coming home and melting down for hours. I kind of regret asking because it tells me something is still not right with homeschooling and tutoring. Part of it is she does not like to do work that is difficult for her. Homeschooling is harder because we really know where she needs work and we work in these areas. At school aides often did much of the work for her and she would "fake" her way through assignments.

Now, we may wake up tomorrow and her attitude could be very different. Time will tell. For now homeschooling still seems to be our best option. She has been happier, has fewer seizures and is talking more. We are concerned with some regression in certain areas. I am thinking it would be worse if she was in school though. I guess I have no way of really knowing.

If time goes on and she still talks of wanting to go to "regular" school we may try a couple of hours per day. Soon she would be entering the really tough social years at school. The time when what you wear and how you behave become very important in the eyes of other students. I really can not imagine her coping with those pressures. I want her to feel comfortable keeping that unique "spark" that is Maizie.
As you can see I am sorting out my thoughts on the schooling issue today. I suppose it is natural when most everyone I know is sending the kids back to school tomorrow. For us, it is just another day with an extra bent to learning thrown in.

I will admit that I miss the days where I had more time to complete art work, read, visit friends and have time for myself. And yet, Maizie is so much more enjoyable to be around without public schooling. I don't miss phone calls or lack of phone calls from teachers. I certainly don't miss the routine from hell that was trying to get Maizie up and out for school. If she ever does go back she would only go in the afternoon. The mornings are too difficult for her. Her seizures are almost always in the morning.

God willing we will all wake up tomorrow and feel energetic and ready to live life in a learning way. That seems to be the best way to teach Maizie. Now, if I could just stop worrying about all of this. They say that takes time. It has been one year since we pulled her out of school. Maybe I am having some sort of bizarre anniversary stress.

Oh! We also see a new neurologist tomorrow that is much closer to home and would hopefully replace our child psychiatrist who has "disappeared".
Good luck to all of the kids returning to school, whether it be public, private or homeschooling! Hugs and prayers for all the parents worrying about all of the stresses that go along with special education.