Coughing, Waiting for testing....sigh

This weekend was filled with me coughing, blowing my nose, sleeping and getting up to cough some more followed by more nose blowing. It sucked. The joys of a sinus infection turned into the nasty summer cold. Argh!

Oh, but I am totally addicted to Maizie's Nintendo DS. It seemed to be the only thing my brain could handle doing while I was awake.

By Sunday Maizie was starting to cough and sneeze. Therefore any testing that we may have been able to get done this week will have to be put off for another two weeks due to scheduling conflicts. Sigh. I am just so anxious to get things moving with the autism center. I guess we have waited this long...we can wait another two weeks.

There are a few things I have to get together to finish Maizie's application. Her last psychological report which is super old. Maybe we should have a new one done? Also, a video of her doing some homeschooling work. They would have asked for a current IEP but since we homeschool I don't have one. Can you hear my brain working overtime on this? Now that we have found a positive possibility I am quite excited about it.

At least today I am feeling better to visualize myself completing the above tasks and the many more I have let slide in the last week. Ugh. Thankfully Joe has kept up the laundry and keeps me and Maizie well cared for while we are snoozing all day. I know...it is really rough.

Tonight we took the dogs for a long awaited trip to the dog park. Check out the pictures at Dog Park Days over the next few days.

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.

Friends through Cyclical Vomiting Syndrome(CVS)

Maizie's little friend Jacqui from In the Life of A Child sent her a wonderful surprise this week. A hand sewn belly cozy decorated with little puppy dogs. Michelle, Jacqui's mom made it. It has the softest fabric and a heart shaped water bottle on the inside.

I explained to Maizie that Jacqui uses one to warm her belly when her cyclical vomiting syndrome is causing her belly pain. Maizie said, "Jacqui is my friend. I love her. I love my belly cozy." Then she gave me the water bottle and ran off saying, "I don't want to see it right now or it will make me think I'm sick."

Two little girls who have never met and yet have a very special friendship. Maizie and Jacqui both struggle with cyclical vomiting syndrome. Maizie feels better knowing she is not alone. Cyclical vomiting syndrome is a rare disorder that acts like a very intense and painful migraine in the belly. It can last for a few hours, a day or like we found out this year...it can last for weeks.Jacqui drew me a beautiful picture of her dog Niki who is in Doggie Heaven. I love it. Maizie loves it too and insisted it be hung in her room. I really wanted to display it in the kitchen so I was a bit torn. Maizie won.Michelle made Maizie this beaded necklace with a sachet of lavender. Maizie is wearing it every day and loves the idea of it "guarding" her from bad smells she comes across in restaurants or stores. What a fantastic idea Michelle had. Maizie loves the look of it and it is helping her cope. People with cyclical vomiting syndrome are sensitive to smells which can often trigger episodes.

Thank you Michelle and Jacqui.

Camping Fun!

Our vacation was wonderful. We went to Buttersville Campground in Ludington, Michigan. This was our first camping trip as a family. It was the first time Joe and Maizie have ever been camping in a tent. I grew up camping and have always loved it. Our vacation was wonderful. Beautiful weather. Nice campground. Fun times with good friends and we were all feeling pretty good! The campground was on Lake Michigan, about four hours from our home. Maizie was nervous for the long drive since she often gets carsick. She was also somewhat upset to be leaving her comfortable routine at home. I was praying the stress would not send her into a cyclical vomiting syndrome episode. Our friends and neighbors Janeen, Brian and the kids arrived before us. Brian's parents grabbed great spots for our tents the Sunday before we arrived. We ran into quite a few "bumps" the morning we left that postponed our arrival by about two hours. Within minutes of arriving Maizie met a friend her age named Anna. They had so much fun playing together. Unfortunately, Anna had to leave the day after we arrived and so their fun was short lived. Addresses were exchanged and Maizie had a hard time accepting that Anna (seen in photo above with Maizie) had to go home. I am glad Maizie had such a positive experience making a new friend. Our favorite times were spent on the beach. We flew kites, soaked in the sun and played in the sand. It was very relaxing. The beach made this by far my best camping trip. I love being by the water and so does Maizie and Joe. Our friend Brian is seen above with his little girl Navaeh. Savonna and Navaeh had a great time rolling around in the sand.
Brian bought Savonna her first kite. Kite flying seems to keep kids occupied for quite a while. There were some great shops in a nearby town. Joe was able to purchase some huge kites that we hope to fly soon. I think Joe is becoming quite addicted to kite flying. Maizie was big into bugs on the trip. No surprise there. Thankfully I brought her bug hut since she caught a few caterpillars and beetles of varying design. Parting with the bugs was another difficult goodbye for Maizie. She stayed in the car while I put them back into the woods. When I came back she was tearing up.

Brian's parents told us about the Amber Elk Ranch nearby. It was awesome. The elk are so beautiful. I had no idea that the elk's antlers grow about an inch a day. They feel like crushed velvet. The largest and most beautiful antlers can sell for about $7,000. The kids had a great time feeding the elk while I asked the guide a million questions. Visiting the elk was definitely an experience we will count towards homeschooling. Making smores is a great camping tradition. Maizie has never liked smores until she had them at Anna's camper. Suddenly, they were the best ever. So....we were very excited to make smores that night for Maizie. Apparently we don't have the 'special smore skills' that Anna's family had. Ours were always too brown or burnt or just nasty according to Maizie. We never did make her a smore she would eat. Argh. You can see in the picture below that she is less than thrilled with Joe's smore making abilities. Every morning Maizie did require her regular mid morning nap. There was one morning where we were concerned she was going to go into a CVS bout. Luckily, she seemed to rest it away. If there is such a thing. The first morning she had to lay down she became pretty upset when she realized we would not be able to go home in order to nap. Once I set up her bed so she could sit up and watch a movie she felt a better. There is something about her migraines that make her want to sleep sitting upright. Luckily, I had lots of blankets to make a pile for her to lay on.Brian's parents do a lot of meal preparation which was very nice. One night Janeen and Brian made fajitas. I thought the peppers cooking over the fire looked so pretty, not to mention yummy.We went to Historic White Pine Village . The first thing we saw was a pond that was hopping with frogs. Everywhere we looked there were frogs. I managed to catch one for Maizie. She refused to hold it. I thought it was quite beautiful with it's bright yellow belly. Maizie's favorite building was the old time store. She does like to shop. Just like her Mom and Dad! The village had an old fashioned ice cream shop where you serve yourself. Needless to say we had to make ourselves some good ol' ice cream cones. I have tons more photos but wanted to share with you a few of my favorites. Now that we are back I am catching up on laundry and feel way behind with everything. I did have a difficult time being around the smoke and now have another sinus infection. Ugh.

All in all, we had a fantastic time and look forward to camping again soon. There were some difficulties with changing our routine for Maizie but we took our time and she seemed to adjust. I would say that she went through very intense homesickness. She especially missed the dogs. Next time we may bring our canine friends along. I missed you all and can't wait to get caught up on your blogs.

Summer Bloggy Break for Fun!

Time for another bloggy break. We may be enjoying a "staycation" or a road trip vacation. I know you are just dying to know what we will be up to. Well, until I blog again you will just have to wonder what we will be up to. I will miss you all. Have a great week my bloggy friends. Here are a few photos from our past vacations. Enjoy!

Animal Planet's 'Groomer Has It' Helps "Teddy" Find a New Home with C.J., a boy who is Autistic

Maizie's favorite show is Groomer Has It on Animal Planet. Top Groomers compete to win a grand prize of cash and their own mobile grooming van.

Maizie talks about the groomers and guesses who will be voted off each week. Her favorite part is when they have a grooming competition and she gets to see them care for the various breeds.

We were especially tickled with the show this week when the challenge was grooming and then finding homes for dogs at a local shelter.

Artist, who is Maizie's favorite groomer picked out a pitiful looking dog named Teddy. He was so terribly matted he could barely move. The other groomers had decided against Teddy because he would have required too much work with little hope of being adopted out due to his eventual appearance.

Artist, being the most giving and selfless person I have seen in a long time was determined to give little Teddy a chance. A new start. Teddy was bathed and due to the extensive matting Artist needed to shave Teddy's fur off. Teddy had to wear an Elizabethan collar to keep him from digging at his irritated skin. Once the fur grew back the collar would be removed. But, until then he looked a tad pitiful when being shown to potential doggie owners.

Sadly, Teddy was not adopted out immediately. The show surprised us by sharing wonderful news. Four months later Teddy was adopted into a happy home with a little boy named C.J.

Teddy is a lucky dog who found love in the arms of a child with Autism. Enjoy the sixty second clip. It is quite touching.

Dogs bring so much joy to our lives. Does your child have a special pet in his or her life?

Controversial New Movement: Autistic & Proud

I love to read the blog Autism Vox by Kristina Chew. Kristina keeps us up to date on the latest news in Autism. I also enjoy reading about her son Charlie, who is Autistic. Today Kristina was interviewed along with Ari Ne'eman, president of the Autistic Self-Advocacy Network(ASAN) about Neurodiversity.

I do believe this is the first big news program I have seen that has shared "the other outlook" in regards to what it means to be Autistic.

Please take a few moments and watch the clip that aired this morning on ABC News. It is titled Controversial New Movement: Autistic and Proud.

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?

Lesson from Kung Fu Panda, Autism & Eye Contact

Knock on wood. Maizie has been doing quite well. Knock on wood again...the Topamax seems to be helping. We have been slowly upping her dosage and we seem to have hit the point where she is even functioning well in the mornings. I am so happy! We have been going places, seeing movies, playing and all that good stuff.

Yesterday she spent the night at her friend Chloe's house. They had a great time. It was Heaven to wake up this morning and have a break from our morning routine. Some days I just want a break from giving Maizie her medications. I know that sounds weird but after ten years of thinking about medications three times a day...well, it gets tiring. A break every now and then is always nice.

Joe and I were able to watch several episodes of Weeds. I love that show. We were laughing like crazy and it felt great.

Today we took Maizie to see Kung Fu Panda. It was entertaining. Maizie loved Po, the panda bear. Jack Black was awesome.

There is a message in the movie that we related to. The Panda's teacher had taught five kung fu masters using the same methods. When Po came along he realized he would have to change his attitude and the way he taught. Once he did Po blossomed into a kicking kung fu warrior.

Changing my attitude was the hardest part for me. Ummmm.....I think it still is most of the time.
Friday Maizie and I had to kill some time before she went to Chloe's. It was super hot out so we went to a pet store. This has become one of Maizie's favorite activities. She loves visiting with the animals.
I took some pictures with my iPhone and something struck me when I was watching her. There have been a lot of discussion in regards to forcing children with Autism to make eye contact. We try not to force this issue with Maizie. Many adults with Autism have described the experience as being physically and emotionally painful. Many cultures find it rude to make eye contact. I figured not making eye contact would not make or break her. So, we let go of that need. Over time her ability to make eye contact with us and others has improved.If she is speaking it is common for her to look down because she has to work so hard to find her words. If we force her to look at us she will lose her words. It is very counter productive.

With every animal Maizie picks up she holds it up to her face and looks the animal right in his or her eyes. They stare at one another for quite a while. The animals seem as into the moment as she is. There are no words being spoken, only an intense gaze. Every now and then she will hold an animal that has no interest in being held yet alone connecting with her. Maizie picks up on that right away, will sometimes hold them to her chest, rub her cheek on them and then quickly put the animal back. She does not force it.

It is interesting to me that I am learning more about how to communicate with Maizie from watching how she connects with animals.

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.