Not so Typical Behaviors

   I wanted to post about unwanted behaviors. Essentially there are good behaviors and bad behaviors. Sometimes when we talk about behavior we are referring to bad but there are good. It is important to label the behavior for what it is. So I have been told by the countless behavior therapists I have encountered. Like being able to put on ones shirt. That is a good behavior. A desired behavior. However, throwing that shirt across the room because we can't put it on is an unwanted behavior. I will be addressing the unwanted behaviors in this post.
   Now in a typical child you have one or two obstacles to tackle in unwanted behaviors: the desire to do as one wants, and or the inability to do the task. Simple to tackle depending on how stubborn the individual is can be trained. Of course, no human is perfect so will not be able to obey all the time. Now let me address the Autism spectrum kiddo who by all means tend to follow directions far better. The break down is the communication. What means something to the communicator means something completely different to the one receiving the message. Spectrum individuals tend to think in pictures. So they try and picture what you're saying. For instance you say don't kick. Ok what can they picture from those words? That is right, kick. They can picture somebody kicking. Immediately that child is going to kick. Instead a "No" should suffice. And forget the shaking of the head. That is something they can't picture or understand either. In general, by the way every child on the spectrum is different. The communication issues is a common problem area.
   Ok so the communication is a big issues got it. That is what actually causes like 80% of the unwanted behaviors. These kids can't tell you what they want. Sometimes Sharon is really thirsty. She can't communicate that feeling. So she gets upset that she is thirsty. Sometimes she will say something off the wall that will indicate. But I usually can't decode before she gets really frustrated. An example would be "My pants hurt". That was cue for me to take her to the potty. I was in fact too late. She was being very erratic before that. However, I did not pick up on it. So it is very important for a parent whose child is on the spectrum to question what is this unwanted behavior for? What are they trying to tell me. Because as I said 80% of the time it is trying to tell you something. Because they are not the greatest with the words even if they are verbal. So the question  is do you discipline these behaviors? They are behaving badly surely you would discipline that child? And you at this point have figured out that indeed they were trying to communicate something to you. The answer is NO. The only time you discipline this behavior is in fact they are delivering physical harm. And that would have to be handled with caution. You would not discipline an individual who is deaf that is using their hands to communicate their needs. And these children are doing the same thing. Our job as parents and caregivers is giving them a different way to express that need.
    Going along with the communication issue you have repetitive unwanted behavior. Any behavior can become repetitive and repetitive in itself can be unwanted. Washing ones hands is a desired behavior. Washing ones hands 20 times is an unwanted behavior. Than there are the unwanted repetitive behaviors. Or scripted behavior, which is a scene played out over and over. Not all spectrum kiddos are scripters, however, mine is. With scripters you have the issue of even the discipline becoming part of the script. So you repeat the unwanted behavior to have the same discipline done over and over. What are parents told? Consistency. Our kids love that. Even if they don't like that discipline part of the script they love the script even more. The parent is now in a vicious cycle with their child. I had to ignore the unwanted behavior numerous times to get out of the cycle. Even though it goes against every traditional parental practice. However, for Sharon ignoring her unwanted behavior is best medicine at times. Even walking out of the room. Repetitive behavior is hard. You mostly have to redirect into a different activity. And it is going to come back. This is a battle that is will be something that will be fought. Sometimes lost and sometimes won. Here is the thing. We don't want our kiddos becoming adults and taking an hour and half to get out the door because they have to repeat things 80 times. Fight the battle it is worth winning.
   I'm going to give you the biggest obstacle for disciplining unwanted behaviors in autistic children. They...do...not...generalize. That is right. You think you have an issue taken care of. You had practiced it over and over again. But you are at church now. They do that unwanted behavior. You are livid about ready to flip a lid. However, you did not teach them at church. You did not tell them not to do it at church. Or practiced it at church. No rather you just assumed that the child would generalize it to the church setting. A typical child would in fact do that. An autistic child will not. Let us take another example you spent years getting your child not to get into drawers. Not to touch the stove. Not to go out that door  when Mama and Dad are not with them. Then you have the bright idea to move. All of a sudden the kid is getting into everything and trying to leave. You are pulling out your hair. What is going on? They know the rules!!! Wrong! They knew the rules for THAT house. You'll have to start over. That is a BIG problem. What is really hard is not to get frustrated because that is a skill very much present in a typical person. And it is hard to imagine not being able to do that. But it is something that has to be skillfully taught to an autistic person.
  There are many other things involving unwanted behavior that can interfere in successful parenting practices. However, these are the main three. In a typical household and by all means I am guessing because mine is not, you would generally in spend 20-40% training. In a spectrum household you spend about 70-90% training. In the typical household the child already has skills ingrained. Less time is spent on that. It is hard work that is put in to find solutions. Solutions can be found that is the main point.
  My message to the autistic parent: continue to work to find a workable solution. Tackle things one at a time. You have multiple issues that you have to deal with. Take one tackle that. Then hop on the next one. And by all means hop on the one you feel is the most pressing. Don't feel like you fail your child. As long as you get up in the morning and try you are succeeding. Know that Christ is your strength! That He will strengthen you through the meltdowns and the bad days. Because Lord knows we have many! Lastly and above all my AUsome families you have been given the most precious of gifts. Don't take for granted. You have been given the Grace of not being able to hide the dirt. There is no hiding the human in your family. The fallen nature in your family. That is so so great!!!! Now you can focus on leaning on Christ for all things instead if yourselves! So do that because we obviously can't do it all!
   To the typical family: I hope this was a helpful understanding  an autistic childs behavior. I'm not a behavior expert but I'm a parent who deals with it. We realize our children are behaving badly usually in the most inopportune times. It is probably in public where they are having issues with the amount of people or an unfamiliar environment. It is important to remember that an autistic can't be a typical child. They will not be able to display the same behavior as your child. It is important to understand that while they look like a typical child and yes do the same things as a typical child they are completely different. It really is hard for me as well as any other parent to explain it to someone efficiently. Also take note that these parents that have the child who might be currently going wakado are fully aware. There is no advice you can give. While you are relaxing watching your night time shows or enjoying your weekend. We are going to conferences. We are reading books. We are trying to find the best way to make our child a productive adult just like you are. Not that you do not do that. It just takes more time for us because after all they require a little more help. So next time you see a child in the super market or the store and think that kid needs a spanking. Think maybe that kid is autistic. Because 9 out of 10 times I see meltdowns in the supermarket and I can tell you it is an autistic kid. And they are overloaded with everything that is going on. They are telling their parent lets leave! But sometimes you have to finish shopping!
   In conclusion let us all pray for comfort in this world for it is not our home. And for the autistic person they are more aware of that. There is nobody that senses that more then that. Maybe that is not such a bad thing. We get comfortable with our surroundings and think this place is not so bad. It is not so for an autistic. Everything has to be adapted to the way they think. They have to adapt. That is not easy. It is vital in every child to install the gospel. To make them aware of God's love. But an Autistic child let them know that home is where Jesus is.

God's Grace

   I normally would just post a small paragraph on Sharon's Birthday. Sharon is 6 today. I have often referred to Sharon as God's Grace to me. Like most parents our lives changed when we had children.When you have a child with special needs it tends to change a little more than usual. I went along the first three years of her life knowing she was a little behind. And eventually we would get her caught up. But when we had her go into an early childhood program it became quite clear. God made Sharon a little different than the rest.
   It wasn't very long after that we got her diagnosis that would now be referred to as just Autism.
Like every parent that gets that word said to them it was a little scary. But Sharon was Sharon even after we went to the doctor. We just had a direction. And mounts of paperwork to get her therapy. Yes you don't have even a second to breath it in before you have to spring into action. Which was fine it was a nice distraction. And being able to do something was better than not doing nothing. We filled out the paperwork sent it in. And got an answer back. Now we only had to wait a year.
   Like I said she is 6 today. And you will find a much different girl. She does not run and hide when she sees another person. She instead says hello. She can tell me a lot of things. And she is progressing like never before. It amazes me with all the obstacles that are in her brain what she can do. I am amazed by her. I am inspired by her. I know that when I read the bible and see the work that God does in Moses, Peter, and Paul hold true. More than ever. Look at His work in Sharon is amazing. And I feel blessed to be the parent who gets to see that.
    Sure we have struggles. We have challenges. I am not shying away from that at all. But to be able to see the results of the design is worth the pain. I guess that is the technician in me. I like her working. I like to see how she is going to react to a certain situation differently. I am learning. Just like any other mother of a child. I like seeing my child grow.
   Sharon makes us laugh. We have a good time just watching her go about her business. There is no greater joy than to see her smile. I often do silly things in the car to make her smile, not caring what I look like. It is worth it to see that smile. She gets the giggles and can't stop laughing. That makes the world go round. The therapist love that. Sometimes that gets in the way of getting ready for bed. But it is hard to get mad when somebody is constantly laughing.
   The question is always asked: Don't you wish you had a normal family? The answer is: After much deliberation, This is God's normal for us. And when your oldest has special needs the youngest adapts some behaviors that take time to work out. So we are not the "Typical" family. But that is not what God intended for us. Sometime when I look at another family and see a child not struggling at certain things it is hard for a second. But I know that child is not perfect either. I know they have struggles as well. Not the same as Sharon's but struggles either way. I know that family has their own thing to deal with. And they have their own Normal. I'm not trading mine.

The United States of Autism: a movie review

      I had the opportunity to go to a movie a couple of weeks ago. Many of us with special needs children don't seize that very often. However, it was a documentary on Autism. Of course benefiting an organization to pay for therapy for individuals with autism. I had no problem forking over money for that. And I think it is important to talk about what I thought about it.
    It is about a man who has a son, nonverbal autistic, who goes across the US to interview families. These families are every where culturally. Their children were on different levels of the spectrum. Some severe to very moderate to high functioning. Because of his son he had started an organization. An organization to provide intensive therapy for children with autism. Like most of the families whom he interviewed he became very active with helping his son and other families on the spectrum. Others had tried to get bills past, talked to every president candidate, and raising money anyway they can.
   There was a lot of good points to the movie. But you really had to look for them. As he tried very hard to paint a negative light on his life as well as the families. It starts out with him visiting families where English was the second language. And one had moved to the US for the services provided. Even though they were very successful in the country that they were in. You see in most countries outside of the US there is little to no help for people on the spectrum. The father had no regrets. Then they moved on to a young couple with three boys. And talked about having a child on the spectrum changed the way they viewed life. They use to walk around the mall and go I want that and that. The father literally looks around the house to see what he can sell to support his sons therapy. He is so thankful for the change in himself because of his son that he was tearing up. He called his son a gift. There were some parents that had regressive children. These are children that seem to be developing normally and then just start introverting.  By all means the gentlemen who had done the film is one of those parents. His son was talking and just stopped talking.They really are looking for that cure. Looking for the glimpse of the child that they had saw prior to the regression. It is was hard for me to see that part. They are pretty sure something is to blame. And this above the rest was the feature of the film.
      However, the point of  a documentary is to capture life in its reality. Most of the parents wouldn't change their child. Save for a couple of parents who specifically said so. Most said this is what makes them who they are. And they are correct. Autism is part of who a person is. There was also parents who had to put their child into a home. Due to aggressive behavior. He is an adult, bigger than them. And they could not handle his meltdowns which happened more often than not. The adult sibling is attending school to get into the special needs field. And also a couple in Salt Lake City that recently had their son diagnosed. They were still coming to terms with it. It takes a while to come to terms with it. And a woman who started a women's support group that wanted to share some positive stories. However, there was a disclaimer at the bottom of the screen saying they couldn't go into all of that.
      I'm going to get into that. In the autism community we tend to focus on the negatives. We as parents go woe is me. But each of these parents were benefiting in one way or another from having a child on the spectrum. It gave them a purpose. Even the father, the maker of the film had gone through 12 jobs prior to this film. And here I am sitting in a theater were he was able to obtain a grant for $50,000 to make this film. And parents trying to pass bills in their states to get insurance coverage for their child as well as others. People getting on committees. People getting degrees in therapy. All because their child has a spectrum disorder. Their children caused them to be better. And to understand life better just being who they are. The children are who they are. And in the film we got to see that. They stole the show. Their talents and love were displayed on the screen brightly.
    The filmmaker went to Washington. He was going to talk to some lawmakers. He only talked to one. And again we went into the blame game again. This doesn't help the children who are on the spectrum or the parents at all. Not one thing obviously is to blame, otherwise, the kids that didn't get that which there are plenty even in my area would not have autism. Also, instead of  looking favorably at the US for services they were very disheartened. Apparently they haven't looked into services outside of this country. Even listened to their first interview. It is bleak to say the least. And the United States is the best country to be in if you have a child with autism. People come here every day because of that.
    People want the government to be responsible for the money to help these children. However, the government has proven irresponsible(I don't know if you noticed) with money. The money required to help is precious. Why put it in an irresponsible parties hands? I, myself, have been frustrated with the whole process wishing for another way. We as a community need to take care of these needs. We either need to pay more tax dollars or take that money that is not used in taxes and help the people that need help. And we can't look to someone who makes more to pay for it all. It has to be an all in. Communism doesn't work. Everybody pitches in. Something. The government can only do so much. We are stronger than the government if we want to be. That is how it was set up to be. As a community we can set up organizations to help every child get the therapy they need. Also instead of most of the donated money for autism going to research. It should be split evenly to families that need therapy for their children. We need to take care of the children.
   Lastly, We in the autism community let negativity run rampid. The typicals are deathly scared of autism. Why? Because there is nothing but negativity out there. Right now they are desperate to find a way to detect it in the womb. That's were the money is going folks. We already got 90% of the down syndrome population eliminated. Now let us go after the Autism community. Nay we need to let our children shine. We need to let people know that these children a *people* are a blessing. Not a horrible thing that has happened to interrupt what would have been a very dull life. My child IS a gift. She is the grace from God that was given to me. What purpose in life do we have if we do not have a purpose? This is OUR purpose. It is God given. Sometimes we like to squander the wonderful gifts that God has given us. I pray I never do so. I pray that the challenge that he has given our family and all of ours is served in His name.

The IPad: a year later

    This has been a part of our lives for a year and a day. We use it every single day. Not just for games or for videos. We use it to help Sharon get her through her day. Sharon's schedule is on the IPad. She wakes up in the morning to a schedule. And she has a schedule during therapy sessions. Having a schedule helps Sharon know what is coming next.
    People think IPad nice toy. In the world of autism we very much use it as a tool of communication. We communicate what we need Sharon to do. Sometimes she gets stuck and we have to break down a task even. It is absolutely wonderful, lifesaving to have the IPad to do that. A program called proloquo2go is what we use for her scheduling. An expensive program. And every bit worth the money. And as you know from past posts that money was lovingly donated.
   I can remember doing the fundraiser. Working hard to get what now is an irreplaceable tool for Sharon. I had woken up a day after my birthday. And it said my fundraiser was at a 100%. I was in tears with the hope of what this thing could do. And in gratitude for the wonderful donations that made it happen. Especially the last donation that was very generous indeed.
    So the things that Sharon has been able to learn from the IPad. We have been able to get her to do tasks readily. We have been able to trace and write letters from programs on the IPad. She was more receptive to taking turns on the IPad them we moved on to board games and other things from there. We were able to get her to transition easier with stories made on the IPad. Oh, and the portable timer on the IPad is my best friend and the therapists' too. The educational games on the IPad help keep her calm in waiting times like doctor offices. Also using it in the store so she doesn't what to go up to every single numbered sign. She is better at making choices from choice makers on the IPad. Even though we use a lot of different tools to help Sharon. The IPad is one of her main ones.
    And I again want to thank the people who were involved in getting this equipment. Your money was well spend. And is being put to use. I also am able to educate her therapists' on the IPad also the social worker. It is important to know that certain things that my not be needed for the typical child. Something that they could very well live without. Could be highly crucial to someone on the spectrum. I am so very thankful for the IPad.

The weight of the world

 

    In roughly 6 and 1/2 months I have lost 80 pounds. As you can see the difference. At the top(I'm in the red) and I took the bottom a couple of days ago. I want you to understand I did not loose the weight so I can look better. I had to loose the weight. At this point in my life I've had 6 knee surgeries. I have another one in the works. Every extra pound was making it harder on my knees. I knew it. 
    I had a plan for a long time. A better part of a year. I knew exactly what I needed to do to lose the weight. So you ask why I waited? I actually didn't. I tried to start my plan. I failed because it wasn't the time. I had a number of health issues like I always do that set me back. At the time I was diagnosed with sleep apnea. Had a huge problem with my back. And I finally did something I should of done numerous times in my life. I prayed about it and said okay Lord I will wait until You say it is time.
    Alright, here is where you are saying you are crazy. But God talks to us in a lot of ways. Remember that communication is 93% non-verbal. I have been taught that by having a child with autism. So you ask well how did He tell you? My migraines began to become less and less. When that happens I know I'm suppose to do something. It doesn't happen often. I knew God set apart time. I knew now was the time.
    It really is the migraines that can set me back. When you have a migraine for a week or two perhaps four you don't go to the gym. In fact you do whatever it takes to stay sane. That might include some comfort food. Also the medicine you have to take to keep it at bay. Just thinking about it makes me ill. Migraines are nasty. I wouldn't wish them on anybody. In a sense it was really not having so many migraines that made me feel that a big huge weight had been lifted. That perhaps even an orbiting planet. That is just how bad it could be. I have had six knee surgeries, have the thyroid disease, my daughter has autism and the whole sleep apnea thing. And it was the migraines that really caused the balls(so to speak) to come tumbling down. No body knows that more than God what a crutch it has been in my life. How often I have prayed for them to lessen. Sometimes He asks us to wait. And waiting is hard for anybody. I am so thankful for the break the Lord has given me during this time.
    I have learned a lot during this time. This is what I am most thankful for. I learned that if I put all my trust in God that things get done a lot easier. It is a lot less frustrating. I learned that I can do things because I am not alone. And when the road gets bumpy it is just time to pull up your boot straps dig deeper. And sooner than I realized the world began to seemed a lot more lighter.

June is the month of love

    June is the month where everybody books a wedding. Well it is the month where everybody came to visit us. I was incredibly blessed this month to get visits from Greg's parents. My parents, sister and nephews. And my lovely friend and her family who lives across the country. And as luck would have it I happened to be laid up after knee surgery so I couldn't work. So I had mandatory time off to spend with them. Yes God does work my life out for me.
    I love people. More importantly I love my people. I sometimes feel tied down. You see we can't go for more than a day or two anywhere. Because of Sharon's schedule we are here. All my family lives far away. And Sharon does not do well with environmental change either. It takes at least a day maybe two to get her settled. Well we don't have that time. We have hours at the most. So we feel stuck in WI. But that is okay. I have family that travels clear across this country to come to us. I am so thankful for that. Instead of complaining about me not being able to come to WY. They just come here. It is not easy. I know the road is long. I actually like the trip. But it can be weary. And even a 6 hour drive is not fun. So I commend these travelers that come from here and there to see us for a few days.
  It was sad to see the last visitor leave. Knowing that I would be going back to my routine of missing them. Wishing I lived closer. Of course, over the years have meet wonderful people that I haven't met. That would absolutely love to meet. I guess that is my problem for talking to people. I, however, am not going to give up on talking to people. I have gotten better at not being able to see them. Mostly because I know in my situation I can't. And it is easier to keep in touch now a days.  However, with my busy schedule it is hard to keep up with everybody. I do feel incredibly guilty for I love them so much.
  During this time in my life, I learned time is precious. The time you get with people make sure you enjoy it. And try to be a blessing to them. I want people to understand that they are precious to me. In everything that I do. I know I am precious to my heavenly Father. And that is something that is a constant reminder to me. I am precious to someone. I know I can't be a perfect example of that.I don't get it right all of the time. But what a goal to have.

My Little Light

So I normally talk about Sharon. I have touched on a couple of difficulties with Leah. Let me tell you about this one. Leah loves people. She gets very excited when she sees any person. It does not matter who it is. And this is complete strangers. And of course more familiar people get even more excited feedback from Leah. She will grab someones hand usually an older individual in the parking lot. She insists that they walk to the store with them. She climbs up on usually other mothers laps or older lady's. She does these things in a blink of an eye. As I try redirecting her I realize maybe she is teaching me something. Every single person she has walked up to did not have a smile. But after interacting with Leah certainly did. They eagerly enjoyed her company even was thirsty for it. So what is that saying about our society. We are teaching our children for their safety to stay away from other people. But is that something that Christ would have for them? God has certainly given Leah a gift of love for people. And a speed to run after them. For which I can't keep up. And after seeing the impact that she has had on their day; I don't feel bad. I tell her it is time to go and to tell them it is nice to meet them. I try and teach her to be less aggressive with the chasing. But she chases after hearts. And she wins them.

No pain, No Gain

   Okay I had promised a post about my weight loss. And I suppose you want me to go into how I did it. But you are indeed asking the wrong question. People ask me all the time how did you do it? And I politely tell them: I eat 1200-1500 calories a day and go to the gym for and hour and 20 minutes a day. But in essence the real question is: How did He do it?
    That fact is I wake up in pain nearly every day. My first thought is not I'm going to be disciplined today and go to work. NO! It is I want to go back to bed. So how exactly did one who just wants to go back to bed in the morning lose 70 pounds? It takes quite a bit of discipline that is for sure. I do have a slightly overbearing schedule. And there is that pain thing. Which I happen to have a knee surgery scheduled for in the near future for. Nothing is impossible with God. I know, I know that is something I had to get into my head before I started this journey.
      I had tried to lose weight before. Many times before. I had failed for one reason. I had no trust that God will bring me through. I had hypothyroid disease that was undiagnosed for years. The knees that needed surgery every time I got started. And of course the migraines that flared up so bad I couldn't even think about getting out of bed. However, I still have all those problems. I still have knees that need surgery. I have had a migraine that lasted three weeks in the middle of this weight loss thing. Luckily I'm medicated on the hypothyroid part. I have to go in every couple of months to make sure it is in check. I came to it again though with a new understanding. That if I rely on God that I will indeed be successful.
     I started out when I lost the first ten pounds I really couldn't believe it. I had never been able to lose more than a pound before. I sat down in locker room and thanked God. Knowing that if I didn't lose anymore I'd still be happy. I kept working. I made it a routine. Desperately carving out time. Knowing that at any time I would have to stop for 1) a knee surgery, 2) a bad migraine, 3) Sharon's schedule. I still am to this day working just as hard knowing in a few days I have to have knee surgery. I know that is what God has for me.
     I obviously have changed what I do at the gym due to the knee. I had to change it to almost all upper body work. And take it easy on the knee. But from 50-70 weight loss I had known I needed knee surgery. Surely if God was holding my hand during this process, He had been carrying me this last part. I have been in a lot of pain. However, I know my work is not finished. I know I can still accomplish my goal and keep my knees safe. And I know in the end it is better for knees to lose the weight in the first place.
     I have had a number of people who have said I have inspired them. Although I feel this is a great compliment which it really is. It truly is wonderful that someone is thinking about me. And wants to say something nice to me. I feel in fact since I really rested in God's hands that I didn't do most of it that it is misplaced. I feel that if you want to be inspired look to the Christ.When He said "It is finished" He gave me hope. When He said "It is finished" He gave me peace. When He said "It is finished" He gave me a home. Be inspired. Be blessed by that as I have.

Losing Weight

     Ah, you think this is going to be about my 66lb weight loss. I will write about that a later date. More important things are a foot.You see Sharon gets funding from the state to get around 27 hours of therapy per week. This out of pocket would be roughly 60k a year. Sharon needs the therapy. She had qualified for it. We waited a year for it. When Sharon was in the mist of losing her therapy I thought I had a hundred pound weight on me. The therapy that had only been in her life for ten months made a huge impact. To end it would be detrimental. All the things that happened in my life. This could of quite possibly weighted on me the most.
    The three weeks that we were working to get her therapy up in running I could only think about it. I thought about how much it has done for her. I thought about the therapists who work with her everyday that may not be there. I thought about how much they care. I thought about her team leader who seemed to get Sharon immediately. Eventually we would have to move on to a non intensive therapy. But it was too soon. That is what we were all thinking. It was too soon. Thankfully her caring therapy team worked non stop to help get her funding back.What a blessing her therapy team was throughout this process. They were there and let me vent. Realizing yes quite possibly I was going crazy. But they understood. And did not mind the calls. Her team leader got multiple texts from me a day. She got calls from me crying. The Lord put me in the right hands. They were able to keep me calm when it was hard to even think. I will forever be thankful for the comfort alone.
   We anxiously turned everything in after her funding expired. Now Sharon was off her routine. Behavior was indicating that. Wetting the bed. Hitting and pushing the sibling more than usual. Trying to accomplish small task while one is set to destroy was difficult. We were in day one. Day two came along and I tried to keep us busy. It was hard for me as well. My mind was on emails, phone calls when am I going to find out. What do I do from here. I also in the middle of working on knee surgery. Also getting Leah set up for preschool for summer. All of those things I can't even think. I was praying for  my mind back. I did my usual things. Went to the gym. Went to work. Did stuff around the house. Kept girls from hurting each other. for the most part. Anxiety level was the highest I ever want it to go. Then day three came and I was done about 9ish. I had an MRI with the anxiety feeling. I had to get this over with either way.
      I called the social worker and she came back eligible after the tests, notes, and questions.  Sharon had her funding back. That hundred pound weight seemed to be lifted in an instant. I was so relieved.We worked very hard, her therapists and I so that it would not effect Sharon that much. That she would not suffer from the lack of therapy. And her routine being off for a prolonged amount of time. I think we were very successful. Although she is keenly aware when I am under stress. I did pray in front of my children. And made them aware that I need help. That I am going through I rough time right now. I full well admit it. I needed God's help. He is always there. And if it were not for the strength of the Lord during this time I would have gone mad.
  To conclude I want to make note that I have a very strong faith in the Lord. However, being a mother gets the best of us. Since I am a mother I tend to something quite odd:Worry. I worry about a lot of stuff. In all of this I know I sounded quite panicked. And I was. I am after all human. I don't worry about myself so much. I'm not even worried about the knee surgeries I have coming up. But I worry about Sharon and Leah. I guess that is something all mothers do. And when you have a special needs child anything that is going to set off their routine is bad. Going from 27 hours of therapy to limited therapy to none that is major huge. Can't even wrap your head around it bad. I mean I don't do things because it is out of routine. Like parties; parties aren't in the routine. And the store is even hard.
   Every thing has a purpose in the Lord. I was able to appreciate even more the therapy that Sharon is getting. Even though sometimes I complain about overbearing schedule. Her funding that is provided. And what a wonderful country we live it that provides such funding. And the fact that I need to be more aware of my daughter needs and providing for them. And being prepared to do so in the next year. So this trail even though was a heavy burden. Was probably very much needed to open myself up a little bit more. And be diligent in this work set before me.

Loving Them is easy

      Sharon in all reality was my first experience with autism. And she fascinated me there was no question. When I had no clue what I was dealing with it was frustrating. I didn't speak her language nor did she speak mine. Although, I had incentive to learn more about autism I had an isolation. Sharon was just Sharon. She was the only autistic person I knew. She was unique and by all means is still. However, I met a lovely red headed boy and his mother whom changed my perspective.
      Sometimes you just feel isolated when you are dealing with a special needs child. Every one around you has typical children. Having typical problems and mine is doing her thing. So when I met this young boy and his mother having the same issues it was refreshing to say the least. And the lovely little boy was so much like Sharon right away. I instantly fell in love with him. He very much had his routine. He, like Sharon had a different way to communicate his frustration. And he liked tickles just like Sharon. His smile and laugh lights the room. This is when I knew I needed to learn more about autism. I wanted to met more autistic people.
    Being able to talk to somebody who get it is invaluable. Autism was our common ground but being friends was easy. I loved going over there seeing our children play together. And it was fun when we forgot that we really should take them both out in public. But we always joked. It made it easier when we were together. Even though they are in a different part of the country I still get to keep up with them. I get to hear about how well he is doing. I get to see his smiling face. What a wonderful family I just adore them.
  The schedule is brutal. After I get done scheduling my life I can't even think about social time or talking to some one I absolutely adore. But these are sacrifices we make. Eventually I will have a social life again. I will get to actually talk for more than two seconds to my friend. Whom I didn't think that I needed. But I did. In the end it was easy to love the family who was in essence yours.

Therapy and Letting Go

      Sharon gets right now 27 hours of intensive therapy a week. Is it working? Well she walked up to a stranger and said "Hi, My name is Sharon, What is your name?" It is something they are working on at the clinic in therapy. And she is finally translating it into the real world. A year ago she would not have been walking around comfortable asking people their names. Today she does. Sharon has gained so much from the therapy. It is really her OCD behavior that can really benefit from multiple people working with her in a variety of ways.
     If I were to just work with Sharon then she sees just one way of doing things. This in turn would cater to her OCD. Do I want 6 or 7 extra people interfering in our lives? Absolutely not. Do I think it is crucial for her development? You bet. And it has proven so. One therapist might come in and play a game one way. The second comes in and plays it differently. This is the plan. It is okay to play it differently. We don't have to play it the same way every time. As long as we are having fun with our friend. One might play on the side or by the coach, the other on the table. All of those things don't matter to someone who is not OCD. But to someone who is it drives them nuts. NO! we play here! They are trying to show her it is okay to play here or there or anywhere. It is not the Autism itself more over that probably holds Sharon back. It is her OCD that consistently is putting her in that box. And no body is more annoyed by that than Sharon. The more therapy she gets the happier she seems knowing that yes it is OK to let go.
      As a parent as well it is very important to let her know controlling every thing is not her job. That in fact it is God's. That everybody has a problem wanting to control things. But it is when we let go and give Him the control that we are free from that burden. We all want situations to be under our control. In a person with OCD they are just a little more obsessed with it. Even though I can look at my daughter and think why are you obsessing over that. I'm sure God is thinking the same thing about me. LET GO.

Small Victories, Big Smiles

     We are at the end of April. The end of Autism Awareness month. Obviously it does not end in this household; but this leads me to take a moment for this post. I was at the gym one day and heard a familiar sound. An autistic child out of rhythm with their schedule quite upset about it. It was swim day for her. It was not like the rest of the days. This was upsetting to her. Her aide was desperately trying to calm her down to get her dressed. I just walked around as if it were a normal day. After all it was for me. I see this too. Others stared wondering what was going on. Later, they were walking up stairs going back up to class. I asked if she made it in. And the aide replied with a big smile "toes" And in turn said that was awesome. She said it was small but it was something. That is what we get to enjoy as care givers of special needs people. Small Victories and Big Smiles.
      I was thinking for the rest of the time how we easily take God's Grace for granted. Than we have children struggle to do the easiest tasks. God says STOP. Don't take my Grace for granted. You better believe these kids don't. When Sharon gets something really gets something she gets the biggest smile on her face. I DID IT. I DID IT. It can be something very small. But we should all be so happy when we work hard and accomplish something. But we take the abilities that God has given us for granted. Nay we even ask for more. We see somebody more able then us and say why not me? But Sharon has been given the Grace to not be able to have time for such nonsense. She is too busy to have to think while doing the easiest tasks.
   And in the same sense we as care givers, parents get to enjoy this. Eagerly enjoying their small victories smiling right along with them. So we as parents can take two sides to this we can get bogged down by their many challenges. Or smile big at their many, many small victories along the way. Wishing you many small victories and BIG smiles.

April is Austim Awareness

This is Sharon. She is Autistic. Doesn't look like it does it? Funny thing about Autism with every child it is different because every child is different. She is a very happy girl as you can see. She gets frustrated. Like every other autistic child she can't communicate like a typical person. And a typical person has a hard time understanding their way of communicating. By all means Sharon communicates. Sometimes it is hard to understand what she wants. And because of this we have all types of behaviors that come out. This is only part it.
     We as humans really just need to be better at communicating in general. We are quite bad at it. We tend to complain about a person rather than talking to directing to person and getting the situation resolved. We get angry at a person don't tell them why. And expect things to change. Communication is not just about what words come out of your mouth. You can say a lot by your actions. I have learned this by having an autistic child and her behavior. I know when she is doing a certain thing she needs something. Or what does she need by what she is not doing? It is all very complicated. But the short of it is that I learned a lot about communication when autism came around. I learned one thing about it. I horrifically horrible at it.
   I have become better as time has gone on. However, there are times that I don't know what she wants. I also still don't communicate properly with others the way I want. I try but still fall short. But God has given me the grace to want to keep working on that. To meet Sharon half way. And while I'm doing that I can learn to communicate and understand people better. I try in the state am in to recognize my actions as well as my words. And what that is communicating. By all means I think I am still bad it. But at least now I know that I am. After all that is one of the reasons Sharon was probably given to me.