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.

5..4..3..2..1..Blast Off!

It took a year but Maizie and Joe finally set off the rocket they made together. Some projects get set aside and this was one of them. Finally, with some prodding from me Maizie and Joe prepared for take off. I have never seen or helped set off a rocket before. I had no idea what to expect and really could not see the thrill in it. I loved watching Joe and Maizie working as a team building the rocket and finally setting it off. Maizie was totally in the moment. She built it, painted it and set it up. Her focus is amazing when she is working on projects like this one. With a bit of hesitation she pushed the launch button and before I knew it the rocket was gone. I think Joe said it was made to go about 600 feet high. I could not even see where the heck it went. Probably because I was too busy trying to capture the event with my camera. Needless to say, I missed it the first time. Joe and Maizie were acting all excited. I cracked up seeing this photo below where Joe was obviously impressed with the speed of the rocket.
After this take off I focused on the rocket and not my camera. I still could not see where the damn thing went. It made a loud SWOOSH noise which I thought was the best part. I looked up and it was nowhere to be seen. Finally, I would see the orange parachute thingy as it slowly descended.

Maizie said her favorite part was the launch button. The noise did not bother her at all. Joe was into rockets when he was a little kid. He lived in the country and I imagine setting off rockets and blowing things up was a major highlight of his childhood.

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.

Chuck E. Cheese and the Lining Up of Objects

Sunday we met Rod, Rhonda & little Madeline at Chuck E. Cheese. Brian, Janeen and their girls called just as we had arrived and decided to come along as well. They had never done the Chucke E. Cheese thing before with their kids so they may have been a tad nervous. I think everyone had a great time.

When you first arrive at you notice the noise level. It can be quite loud. It is always a shock to me. Maizie has learned to take it all in stride. The first thing we do is place our order and purchase tokens. Dinner and a hundred tokens keeps us busy for about two and a half hours. I remember when our trips were only about thirty minutes long. Progress!Ever since Maizie was a toddler she liked to put things in some sort of order. Many times it did not make sense to me but for her these "arrangements" of objects were important. The first thing she did as a toddler that made me wonder was when she would repeatedly get up in the middle of the night and put all of her toys, clothes, everything she owned under her twin sized bed. I would wake to find everything fit so tightly under her bed I could barely pull anything out. At first I was in awe. I carefully put everything away and hoped she would never do it again. Much to my amazement she continued this nightly activity for weeks. There were many mornings I just stood there and cried from exhaustion.

Without really realizing what we were doing, we taught her activities to replace this ritual with. Sorting and pushing play doh into meticulous little chunks kept her busy for a while. I remember showing her how to play with Little People figurines. She really had no interest in role playing with them but lining them up peaked her interest. So, we lined them up together. Little by little the lining up of toys replaced her night time job of pushing all her belongings under the bed. Whew. I was so glad when she moved on from that. Instead of a big mess I woke to find her toys in carefully constructed rows or circles around her room.Maizie's interest in aligning things is still alive and well. Before she played any games she began sorting her tokens according to years. We had fun helping her put the years in order. Maizie wanted to find a token of the year she was born. Yes! A way to talk a bit about the passage of time and years. There was only one token from 1997! So...she saved that coin for last. Very cute.

I have noticed areas where her desire to place things in rows has helped her learn a skill. Puzzles is the biggest area of increasing skill. Maizie will lay out the puzzle pieces in rows around her desk. Over time she has begun organizing them according to colors or edges. She does not do that every time but is toying with this new organizational method and is becoming quite good at it.

Now, if we could only get these lining up skills transferred to understanding the passage of time, understanding a calendar, simple addition, subtraction and remembering important personal information.

Just like in the movie Kung Fu Panda...I have to adjust my attitude and teach her in unique ways. There is certainly nothing wrong with that. It just takes a bit more time, patience and creativity.

What repetitive activities does your child with special needs do that has benefited him or her in other areas?

The Gift that is Technology

When Maizie was born I had the intentions of limiting her television viewing, she certainly was not going to be on the computer or playing game boy. Oh....how things have changed. It became clear early on that Maizie had an interest in technology. She was drawn to Joe's laptop at the age of one. In the photo above Maizie was just three years old. She navigates and uses the computer better than many adults we know. Granted, Joe and I both have a great love for all things tech and teaching Maizie in these areas comes easily.

Considering her lack of communication through words, anxiety, vomiting, extreme bouts of frustration and inability to focus at an early age we were thrilled when we found something that Maizie enjoyed doing. For years she was not interested in toys or television. It was hard for her to focus on anything for even a few minutes. Even eating was a struggle. But computers were different for her. She had more control and recognized this. I remember her working at the computer for a minute or two and then standing up and twirling around before sitting down for another two minutes of hard work. She liked that she could move around and when she returned the screen would be the same. Television was too busy, too unpredictable and certainly too loud.

In time it became clear that even her favorite computer activities could not be enjoyed. Her aggression and inability to focus increased. I never thought in a million years that I would choose to give my child medications. Granted, I had no real previous exprerience in such matters so it was easy for me to say that. The decision was not made easily. Medications helped her focus and reduced her outbursts. Maizie said things like, "My brain quiet now." You could sense the relief wash over her. Medications have enabled Maizie to focus, to learn, to communicate and lessen the intense anxiety and sensory issues that have always plagued her. That is not saying that finding the right medications has been easy. Anything but.

I have heard some people say that technology is being used by parents as a babysitter or like a medication. A way for the child to zone out and for a time leave their behavioral issues behind. To some degree it is true. A child who senses everything more intensely than we can even imagine finds refuge in an online world that they can control and disappear into. Parents are given a break from their child's frequent obsessions, outbursts or aggression. For us technology was at times a life saver. A break for Maizie when pain and frustration would not ease up. A break for me...of course.

Recently technology has brought about a new surprise. Communication. Webkinz have brought Maizie out of her shell a bit more. Not only is she learning but she talks to her animals and tells us about them in great detail. Joe and I play Webkinz and send her Webkinz mail. She asks us questions about our animals and takes great joy in seeing us play with our furry pets. It has been a way for her to focus and work on two way communication.
Her little friends are also into technology. Chloe asks Maizie questions about her Game boy games and better yet, Maizie asks her questions. They share Webkinz stories and recently they have both fell in love with Bellasara. I watch them as they teach one another how to advance in the games. Maizie helps Chloe decipher the stories. This give and take is a huge leap forward for Maizie.

It is amazing to me that she is learning how to balance her time with her game boy, computer usage and music. I used to nag her to get off the computer and put strict limitations on her using them. Once I decided to let go of my obsessive need to control her time she stopped feeling my pressure and has regulated it herself. It helps that we have more time for her favorite activities. She does not come home from school frantic, exhausted and irritable. She can start the day relaxing with her favorite Webkinz and then move on to other activities. I like hearing the lap top slam shut and her saying, "Okay! I am going to work on something now." Yes! Balance is the key.

Maizie's blogging has slowed recently but I know she will be back at it soon. Today she was thrilled to find out that the actors in iCarly all write blogs. She read me a post and with a huge grin said, "I blog too! Just like them!" Yup, she sure does.

A Grandfather recently developed a browser for his grandson Zachary, who is Autistic. This is a fantastic idea. We have moved beyond needing a program like this but it is certainly a step forward in helping children with special needs enjoy the Internet. We are planning a camping trip and will have no access to technology. I was explaining this to Maizie today,"You know...we won't be able to play Webkinz or Bellasara or blog or anything." She stopped walking, looked at me and said, "It's okay mom. I know you can handle it."

Homeschooling the Special Needs Child...Should it be Legal?

Parade magazine asks...

Should Home-Schooling Be Illegal?

That is the question of a recent article in Parade magazine. Things in California are getting pretty tough for homeschoolers. I am thankful that we live in an "easy" state for homeschooling.

What happens in one state can eventually affect everyone. It does not take long for other states to follow suit. I can not imagine if I had to get approval from our local school system. One reason we homeschool is to avoid the mind blowing red tape involved with the public school system when educating a special needs child. Especially since we have different views when it comes to educating an Autistic child. Our child's needs are unique and the schools have never been able to meet her needs or understand them. We certainly tried.

Check out the article and let your vote be heard. Hopefully Parade Magazine will follow up with the amazing statistics that prove homeschooling works and works best without the government getting involved. I pay taxes for our community schools and have an active interest in them even without my daughter attending. I believe we must support one another for various schooling decisions.

I don't want the government to pay out a penny for our homeschooling. I don't want them to be involved in any way. I believe that once we ask for financial assistance from the government for homeschooling we are asking for trouble. Schools lose money as the homeschoolers increase every year. Especially for special needs children who are the most expensive to educate.