Will it ever end??

Yesterday, i picked the Captain up from school. He came to the car visibly upset. He had a Flea Market day at school which his grade sponsored. I had made really great stuff for him to sell at the Flea Market and he was super excited to go to school that day and sell it all. I was expecting to see him super excited. He wasn't.

I asked him how the Flea Market went and he simply responded that it was "OK". It wasn't the Flea Market that was bothering him. I told him that he needed to tell me what it was that upset him so much. He told me that the class bully had been bothering him again. The Captain had received 100% on his space science test. It was once an area of obsession for him, so it was no surprise to me that he received 100% on that test. He told me that the bully saw his test grade and called him a cheater. The kids went on to say that the Captain was a worthless loser who could never pass a test nevertheless receive 100% on one. The Captain was devastated at the accusation and attack. The kid then went up to The Captain and stomped on his foot. Captain went and reported the foot stomping to the teacher and he child muttered an apology to my son. Then once the teachers attention was diverted, he did the same thing again. I saw my child's foot after school and it was discolored. I was furious.

I have reported this kid several times throughout the year. Little was done by the school to curb this child's behavior. The principal sat him down once and told him that he needed to leave the Captain alone. Which he did for a month, and then it all went back downhill. I looked at my child with tears in his eyes and told him that he wouldn't have to deal with that kid again. He needs to get through the next few weeks and then I was going to pull him out of that school and homeschool him. He would be able to feel good about himself and would be able to interact with children that would treat him with kindness. The Captain was happy and relieved at the prospect. Everyday it becomes more and more apparent that this is my only option for my kid. Sometimes when God wants you to do something and you are on the fence, he makes his desires more apparent each day. I am taking this as a sign from God and I am gonna give it a try.

Decisions Decisions

Over the past few weeks, my family was thrown a few curveballs that I have had to deal with. They are  personal, so I won't share them, but I think its quite funny how a few things can come into your life at a moments notice and destroy things that you have worked months on building.

Over the past few months, I had been working on becoming as educated in the areas of autism as I could possibly be. I have checked out videos, books, and was trying all sorts of new techiniques to help my kids. I have no other choice. The schools are giving my kids what they need and the insurance company is not covering any of the services my kid needs either. So I must become an expert on what they need and teach it to them myself. I am surprised that there are not more books and programs out there that are focused on training parents to provide the assistance they need for their children. All the books give you references to programs you can send your kids to or the type pf therapy they need, but i can't find any that say.. this is what ABA therapy is and how to do it. Professionals must have learned this stuff from somewhere..right? I need to search textbooks I guess to find what it is I need.

Needless to say, my own personal stuff had stalled out all the progress I had been makin gin this area and I am now forced to try to get back on track. Why is it so hard to do this? We as humans are so reluctant to re-start projects or goals that we had previously started and made good headway on. We remember all the hard work we put into it, all the wonderful results we had because of all the hard work, and instead of having that motivate us , we think.. that sounds so exhausting. I'll just sit here a while longer and think about it. Sometimes, I wish I was more like Data from Star Trek. I can just switch a chip off in my brain and proceed with my mission without letting other thoughts distract me.

Captian Obvious came home the other day all excited. I had purchased him silly bands because they are all the rage and he had worked really hard at saving money to buy some. It wasn't enough money to buy the ones he wanted, so I chipped in to reward his attempts at financial responsibilty. At school, he had traded a few silly bands with some other kids and he was so excited about it. Being a ASD kid, all he wanted to talk about were silly bands and why he liked them. I listened for a half an hour about the greatness of silly bands. Then out of the blue, he tells me in a quite different tone, "Mommy, you wanna know the other reason I like silly bands so much?"  Uh -oh I thought. I am in for another half hour of silly band greatness talk. "Why?" I asked. "Because if you have silly bands, then kids at school will talk to you because they want to know what silly bands you have to see if they can trade. Today, kids actually talked to me Mom." My heart broke a little inside. My kid has to wear these silly bands in order to get kids to talk to him. Then, I got angry. The kids are only talking to him because they want something from him and they are going to walk all over him and take advantage of his desperate desire to have friends in order to get what they want. After they do that, they will no longer talk to him anymore. Then I will have to buy more silly bands or whatever the new craze is to give him the opportunity to be used again. I think that was my breaking point. I had been talking to a lot of homeschooling families and hearing about the reasons why they chose to homeschool. A lot of parents had told me that they wanted to have control over the kids of relationships their kids engaged in so that they can ensure that their children have meaningful friendships and relationships in their lives and not end up in situations where there is peer pressure and manipulation at the core of the relationship. I feel the same way. I want the Captain to be around people that are gonna love the Captain for being him.If that means I have to homeschool him and drive around town all week to ensure that he maintains quality relationships with other kids, then thats what I am going to do.

I have some more looking into, but I am 90% sure I am gonna try virtual school next year.

The Fears

Yesterday, I sent Meepy off to school in the morning. He was so excited and happy to go, that he leaped out of the car and ran straight to his teacher without giving me a second thought. It makes me happy that he likes school so much, but it also terrifies me.

I love that my child is so happy. I love that he is a lover and a hugger. But you start to think, there are sick people out there. What if I turn my head for one second and someone runs off with my son. He has no fear. It doesn't bother him much to go off with a stranger working in a church daycare we are visiting. (Don't worry, I know most of the people there, but he does not). Or if we are out on the playground and he sees a family that interests him, there have been plenty of times that he has simply wandered off to follow the family.

When I was in elementary school in New York, there was this young girl who would occasionally wander up to my group of friends and talk with us. My friends mainly ignored her or walked away, but I didn't. Mainly because the girl would always tell me how pretty I was and how nice I was. Who can ignore a soul baring compliments? I didn't know her name, but she signed my autograph book with a "have a nice summer" message. The following year, while walking home from school, the girl went missing. I remember hearing about it on the news. I didn't think much of it, because I honestly didn't understand it. I thought perhaps that she was waiting for her parents somewhere and they forgot where they were supposed to meet her. I kept hearing on the news that she was autistic. I didn't know what that meant. A few weeks later, they found the girls body in the nearby woods. I felt bad for her. I felt bad for her family. Her family spoke about how she was a loving spirit and enjoyed making new friends. How she would sit down and talk to anybody. She loved life and loved people. They thought that it was because of these qualities that a stranger was able to convince her to go with them. That's what lead to her death.

I heard last week on 20/20 about the case of Somer Thompson. A little girl in Florida who went missing on her way home from school. She was later found in a garbage dump in Georgia. I had followed the story and prayed fervently for this child from the day she went missing. I was very upset when I learned that she was gone. However, when listening to her mother speak on the 20/20 piece, I heard her speak the words of my heart. That Somer was a beautiful loving girl who had no fear. She loved animals and people. Her mom was often scared and would try to teach Somer that she couldn't talk to random people. That there was evil out there in the world. Knowing the outcome of that little blessed child's life makes my heart break.

The fact is, I face the same fears. These stories are all a part of my reality. They are the things that keep me up at night. How can something so beautiful about my child, be the one thing I pray will eventually go away. I pray each night and for years I had asked God to help take away some of my fear, for it often keeps me from living my life to the fullest. I so desperately want to live a life where I am not afraid constantly. However, I do not wish that for my child. I do not want him to look at the world as a scary place and be scared to step outside, but I do need him to have some fear. Enough fear to tell him to run away or scream for help if he feels that something is off. Fear enough to keep him from running out into the middle of the street or getting into a car or walking off with someone he doesn't know. Those types are fears are unfortunately necessary for our survival. These words taste like vinegar. To speak them feels as if I am killing a dream. A dream of how this life should be.

This is my reality. This is my burden. God, help me and all the other mothers who carry this burden through it all. This is my prayer.

Sitting on the Sidelines

In the effort to help my children live a "normal" childhood life, I signed Captain Obvious up to play sports. The Captain was extremely excited to play. It gives him a great sense of pride and its something that he can brag about to his friends at school. However, when we go to practices or on a game day, he seems to hate every second of it. He often is found wandering away from the group, kicking dirt around or playing with a rock he found off on the side of the field. When the coach calls him over, he walks over reluctantly, trudging the ground the whole way. He doesn't seem to focus when people are talking to him because his eyes are all over the place. He's listening though, because he often does exactly what they tell him to do. The coaches loves him for that and are really great with taking any extra effort they need to with him.

What pains me is seeing how his teammates interact with him. The Captain will walk over to the kids on the team, but will never talk to anyone directly. He just kinda hangs around and waits for someone to say something to him. They often don't because they think its odd that this kid follows them everywhere and doesn't say a word. The blessed ones who do take the effort to talk to him wind up thinking he's more strange because instead of having a normal light conversation, the Captain will start quoting an obscure Sci-fi movie that these children have probably never seen and therefore don't realize its a quote. So they smile and walk away. I try to teach the Captain about positive social interaction. What sort of things to talk about with children he is trying to get to know. I try to teach him to have self confidence and to listen and pick up on cues that kids might give him as to whether or not they are interested in what he has to say. For those parents out there of Autistic kids, you know that this is like talking to a brick wall.

I often find myself talking to kids off to the side by myself, letting them know how cool Captain Obvious really is, but that he's a bit different. It's a hard thing for me to do, because part of me does not want to interfere with his relationships. However, I often find that kids are relieved or grateful to be clued into this information. Most kids will make more of an effort with him. Some however, use it as a reason to keep him further away. I find the kids who make the effort to be tremendously beautiful souls.

It's hard to be a parent sitting on the sidelines. You know your child's potential to the fullest. You know that they can succeed. You want to shout it out to the whole world, but you can't. You have to just sit there and watch, praying every second that everyone else will see exactly what you see. It's frustrating having to watch your child unconsciously build walls hiding all the potential they have. It's heartbreaking seeing them so upset wondering why no one sees it all.

This week, I saw a few of his teammates (whom I have never spoken with) rally around the Captain after he got a small injury during the game. They sat with him, got him ice, misted him with water, and encouraged him. I saw my son, while in pain, authentically happy in the moment. I thanked God right then and there for the blessing he shown me on that day. Please God, send me more of those kind of kids.

Many Choices, No Solutions

I have nicknames for my children. They are made out of love, so please don't judge. I like to call one of my sons "Captain Obvious" because without fail he will always seek to repeat and share any information that is already received by other people. I know that it's not his fault, but its something cute that me and my husband day to each other in order to keep things light. I have a son we call "Lurky McLurkelson" due to his uncanny ability to hide in shadows. You can be in a room for a long period of time, glance quickly at a corner, and there he is..like the twins in The Shining.. scaring the bejesus out of you. Finally, there is "Meepy" who doesn't yet talk, but makes all sorts of odd noises and sounds. He's at the point where he repeats what people say, but does not use words independently.

Captian Obvious has been having serious problems at school due to his learning disabilities and Asperger's. Because he struggles in school so much, he is often bullied and teased for not knowing information or saying things that are just plain weird. I have seen this first hand. When I pick up my boys after school, a few boys will see him and say, "Look it's (Captain Obvious) Everyone run away!" And all the kids of course run away and my son is left feeling defeated. The fact that Lurky McLurkelson is gifted doesn't help matters either. Lurky has plenty of friends and is able to do all his school work very easily. He has no idea why Captain Obvious has so many problems. Captain has said to me many times that he wants to be homeschooled. He is tired of all the kids making him feel dumb. When your child says something like that to you, it breaks your heart. It also makes you want to do whatever you can to help. His doctors tell me that homeschooling or a private school is what is going to be best for him in the long term. The school system tells me that he needs to be in a regular school setting and learn how to survive people like this or else he will never be successful in life. Who do you believe?
My major concern is socialization. I keep hearing about all the homeschool groups out there for socializing. But are they going to be the right fit for my son? Are there kids his age in those groups? If so, how  many? Are these kids going to make fun him too? Plus to find information about a homeschool group is ridiculous. I just want to call someone who is in charge, meet up with the group and check it out before I make any decisions. Most of the groups in my area charge a fee just to be able to access contact information. Really? I don't feel I should pay unless I am committing to a group and I don't know what group I am going to commit to unless I check them all out.
Why does homeschooling cost so much money??? I checked out a few virtual school options available to me. In order to be able to  but him in the most ideal program environment for him, it would cost me $5,000 a year. I know that to some, it doesn't sound like much.. but to me.. its plenty! I can't afford it! It's truly frustrating.
Apparently in order to successfully raise special needs children you need a crap load of money. Unfortunately for us, most special needs kids come from poor families. Don't you love the way life works sometimes

The Beginning of a VERY long journey

They say that having a child diagnosed with Autism or a related ASD disorder can be devasting to a family. That often people go through a period of mourning once they learn the news.  I can't say that I was devasted at the news. It was really more of an annoyance to me.  I looked at it more along the lines of  "Great! Another thing I'm gonna have to deal with!"

I, like most stay-at-home moms, am driven crazy on a daily basis. Trying to maintain a household on little to no money and catering to the "I'm Hungry Choir" which performs live in my kitchen 5-6 times a day is truly stressful and exhausting. Then you add to it the school drop offs/ pick-ups, chauffering to extracirricular activities, and the harassing trips to Target & Wal-Mart to "window shop" and you will find yourself like me... slow to get out of bed and praying each night that God will send you a nanny who works purely for the joy of serving children. I am sure that perhaps in an alternate universe my supernanny exsists. However, in this universe, there is only me. So you can see how the news of having two ASD kids mentally annoyed me. There is so much work and responsibility that comes with raising a special needs kid. All that work added on to the work I already had on my plate sent me into an overload. What happens in an overload? Avoidance! You wake up and think, " I dont have the money, energy, or time to do everything that I need to accomplish today. I can't do it! I just can't do it!" So you don't. At least at first you don't. Eventually you realize however that your kids are depending on you and you alone because no one else is going to help them. That's when you become the warrior.

Jenny McCarthy named her book Mother Warriors. Before I had learned of my children's diagnosis, I listened a great deal to Jenny talk about her personal experiences with Autism. I grew to admire her and respected her a great deal. I loved the name of the book and I loved the reasoning behind it. Mothers of ASD children often must become champion warriors for their children because EVERYTHING is a fight! I never thought in a million years that I would be one of those women. It wasn't until parents I have spoken with told me how inspiring and helpful I was that I realized I was one of those women all along.

There is nothing about me that is different than the average everyday woman. Perhaps I might even be more lazy than they are inherently. However, when it comes to my children and their needs, I race to the battlefield with weapons in hand ready to fight any person that stands in my path to getting the help and services that my kids need. I do not win every fight. I often must walk away with very little progress. But every battle infuses me with more knowledge and passion. So I walk away, go home, and plan new strategies. For the next time an opportunity presents itself, I will be ready to charge the field once again.

For all you mothers out there of ASD and special needs kids, I hope my blog might inform and inspire you to fight for children and to continue the fight no matter what the outcome.

God Bless!