A Diverse Spectrum

  Autism is a spectrum. It represents itself in many different ways depending on the person. The one real broad view of Autism that people have is RAIN MAN.  The movie has an Autistic man who is low functioning in many ways but has unique abilities that can't be ignored by a greedy brother. Although this movie is quite entertaining it doesn't do many Autistic adults justice. Most Autistic adults are invisible struggling to get along in this world. We are a highly visual society you see. We can see that the character in RAIN MAN was impaired in some way. We tend to act accordingly. It is hard to know how to approach someone that is different. I don't mean skin color, gender, or nationality because I don't view that as different. I talking a non-neurotypical. My advice is approach them like everyone else. Find out where they're at. We are all human and love interaction. My oldest daughter on the Autistic spectrum might seem stand offish but loves people. She will talk about a person for several minutes after they are gone. My other daughter on the spectrum will talk your ear off. It's a diverse spectrum no two are a like. Mine are opposites but both Autistic.
    Sharon is what would be considered in the mid range of function. She is very verbal. However, has trouble communicating. People are confused when I say that she can talk but can't communicate. We communicate in a lot of different ways. Verbal is actually just one of them. We point, gesture, facial expression, and body language all communication. Sharon has trouble with all of that. Sharon verbally will get mixed up as well. We have to figure out what she wants by remembering what movie or show she just watched and puzzle it out at times. Other times she can be very direct like "I'm Hungry". Which is wonderful. We love when we get this directness. Sharon also in very visually autistic. I take her out and people know. She is in her own world. She sings, laughs and dances her way. She usually has to be moved around people.  The thing that I love about Sharon is that she always puts a smile on someone else's face. Always. You can be having a bad day; Sharon will bulldozer that faster than a tornado.
     Leah is a high function autistic. We didn't get her diagnosed until she was 9. She has a number of issues. With autism you can several underlying diagnosis. She has ADHD and Mood Disorder. We were mostly concerned with the mood disorder. She is in of moods in a blink of an eye. However, She has the cognitive impairment of an autistic. She has trouble with sound. She will get over stimulated and it leads to meltdowns. Her sister will very rarely meltdown in public. Leah has no problem with this. The fact that she has trouble with moods it can come out of no where. When you think every thing is fine its not. The other hand of this Leah happy is the best experience you'll ever have.  Leah is not visually autistic. Leah looks like she is the typical neurotypical kid. She has an invisible disability.  We've had people give unwanted advice on discipline. We have had people say she doesn't look autistic when politely told that she does. Autism does not have a look by the way.  I have also had the suggestion that maybe she just needs more sleep. Yes, we could all use more sleep around here.
     I really haven't come up with a calm mature way to deal with these type of problems.  Most people look at Sharon and think that she is my main problem. She is of course a challenge. She is also a huge blessing to me. She is so happy all the time. She teaches me what joy means everyday. You really have know idea what a blessing it is to have someone that just loves life like Sharon. Leah is my biggest challenge in my life. It isn't because she causes problems. It is because I'm not exactly sure how to help her yet. The fact that she is invisible. She will have this extra challenge of constantly being judged for being extra. Leah is well, she is Leah. She is sunshine. She will warm you on a first spring day. She will be bright. She will burn your eyes in the middle of summer. She will burn your skin in mid-august. You have to be prepared with sunscreen. This kiddo you need her desperately because the world would be dark without her.

More Than Words

 We all want to express how Thankful we are when somebody does something for you. We use words, hugs and expressive body language. There comes a time where none of that would not be enough. I'm with that when I think of the people that helped Sharon and Leah along the way. I could come up with plenty in thought. I have memories. Simple everyday things that were done that made huge impacts. The servitude that goes into caregivers' hearts is extraordinary. I look back at all WE did. I think wow look at them fly.
   Sharon was 4 when she was put into intensive therapy. I had know idea what to expect. The only thing I really knew was that our lives would be upended. When we talk about intensive it was close to 30 hours a week. We had to be available for this therapy. It really wasn't a choice for me. I knew Sharon needed help. I didn't expect that in the process of Sharon getting this therapy I would grow. I didn't expect that the biggest support out of any where was that group. We were going through the process of learning about Autism. Dealing with Autism. In the middle of all of that, here comes this miracle of massive support in a form of therapists. We learned so many things during this time. We learned how to fight for her. We learned how to teach her. We learned most importantly its okay and Autism wasn't this ugliness that smeared our lives. Sharon was perfect the way she was. We worked on so many things tirelessly. When I look back on that time I think of how blessed I was to get such a wonderful group of therapists. I still seek advice from them today. I wasn't expecting to go out of intensive therapy myself completely changed too. They not only worked really hard to help Sharon. They helped the entire family. It wasn't there job to uplift me and hold me up when things were bad. They did that. They are suppose to put in their shift and go home. They always were telling me about how they thought of Sharon even when it wasn't their job. That kind of dedication was so ingrained into me. If her therapists fought this hard I really need to step up my game. I need to do everything I can for her. My motivation was tripled because they inspired the best in me. They gave Sharon her confidence to find her way. Sharon would hide, shy away from any social situation. Today, Sharon will stand in the middle of a crowded room and dance away.
   Along the way Sharon has had different therapists. After intensive she still has behavioral therapy. She goes to music therapy and has horse therapy. Multiple people have taken her under their wing. We have been blessed with so many special people in our lives. When people talk about special needs it's always in a negative light to it. One of the things we truly are blessed with is meeting so many amazing people. I mean the best people.
   She also gets numerous people who work especially with her in school. Everyday they take care of her needs. She is treated with respect and kindness. We have worked hard to give her the best opportunity to learn. She has been gently pushed forward. She will be in middle school soon. Something that I was dreading. However, I know that we will meet new amazing caregivers that will guide Sharon to where she needs to go.
     Leah had a little bit of a different journey. She was diagnosed with Autism much later at 9. She has had so many doctors trying to figure her out. They didn't quit until we got the answers we needed. She has a stomach condition, mental illness along with Autism. It took me a while to get mental health services. I finally was able to get a therapy service for us. They in turn were able to help me with getting the proper services for mental health. I was familiar with Autism services but mental health is a different puppy. It was the care of this therapist we were able to start a service plan for Leah. Leah has psycho-behavioral therapy, Social skills therapy and Martial Arts therapy. She also has a psychiatrist and psychologist. We all have to work together to get effective results. This requires communication skills on a higher level. We have meetings to go over data from other members of the group. All in the hopes that Leah will reach her full potential. Everyone that works with her has patience and understanding. There is a lot of misunderstanding when it comes to Leah. She speaks, acts and by all appearances are concerned neurotypical. People mistake her a child who hasn't seen a day of discipline. Believe me I have gotten my share of unwanted advice on how. Her therapy team get her. They understand her which means the world to us as a family. That alone is priceless.
    Leah also has a team of individuals that work with her in school. Due to Leah's mood swings we tend to have to play each day by ear. Her staff at school totally understand that. The communication again comes into play. We have to be able to navigate through the stormy sea to get to the other side of a day. Sometimes you feel like your drowning. Some days you feel like you are on a cruise with the best entertainment. Like so entertaining. You need the best crew and we have always been so blessed when it came to that. I mean she has had the best Paras that worked with her. When she was getting no outside help school and their help was our anchor. During that time her Para was really a God sent. A true angel. Always trying to be positive even when I was at my lowest. I don't know if she was more helpful to me or to Leah.
   We also have Respite workers. These are individuals that come and give the parents a break from being the main caretaker. They also provide an opportunity for the individual with special needs to get a break from the rest of the family. My Respite workers have known our family for several years. We use to just have them play with my kids. They became old enough and then I hired them as my respite workers. In all honesty they already put in their time. It was a no brainer to hire them. I really couldn't do the things I do without them. I have 7 different therapies we are doing. A lot of the time I delegate some of that to them. They always help me remember my schedule. They don't have to do that. They just do. We work as such a good team to accomplish the week. They pour so much care and understanding on to the girls. We think of jobs as just that. Great you got a pay check good for you. Then you have something like this. This is servitude that goes beyond the normal boundaries. We think about serving the community or serving the church. Here we have both. There is a desperate need for people to serve in this capacity. It isn't that we want to get away from our children. It isn't about I kinda of want it. It is a desperation of need. Someone serving in this capacity deserves far more than words. They deserve to know that they are the best kind of servants. Well done good and faithful servant.
  As you can see we are parents. We do what we can. However, We get a lot of help. We don't go on this journey alone. It is unfortunate that compliments I get can't be broadcast to all the wonderful people that have helped us. When someone says that Sharon and Leah are doing great, you are a part of that. I share that ownership with every single person that put their heart and soul into tireless working. That got head banging frustrated trying to get them to learn a skill. I wish so much that shout to all of you, WE DID IT!!! Sometimes you work on something for years and they finally get it. Sometimes they get it in a split second. That is our victory not just my family. Every milestone had several people behind it. Every step we had someone there gently guiding us onward. When we look at Sharon or Leah years from now it will look different. I know that all the success that was made was a team effort. I promise I will never forget that. I wish I had words in my vocabulary to describe the gratitude I have but sometimes you need more than words.