My Passion

What is your passion? A question a friend of mine posted the other night on Facebook. The question got me to really start thinking. As I was reading others answers, I sat there thinking what is my passion? Hers was her cooking and her passion to help find a cure for Cancer. Others were there jobs, helping others, etc. But, what is MY passion? When you become a stay at home mom you sometimes forget that there is a life outside of being a chaperone, a therapist, a maid, a cook, a play buddy, etc to your children. I am not complaining at all about being a stay at home mom. It has been the best thing for both of my children since my husband and I made the decision for me to quit my career and stay home. But, what is my passion?

Before I had children my passion was my career and even after I had Cam for awhile it was still a major passion for me. It pushed me and gave me a rush that I loved. After awhile that rush stopped and I felt like I lost a passion for anything. But, then Cam was diagnosed and a little fire started inside of me. At that time it was a fire…a passion for knowledge. Because  I wanted to learn anything and everything I could about Autism. I didn’t want to know the “why is he Autistic” so much as I wanted to know how his brain worked differently, how I could help him and how would his life be in the future with Autism. I went to every seminar I could, I read every book I could and I talked to every doctor and therapist I could to get all of this information. I still do all of this…hence why I never sleep. Then I became involved with the group Autism Speaks. I volunteered to help with the first walk in our area a few years ago and it helped me to learn about the organization and being involved with this first walk ignited a bigger fire inside of me. Being a part of this is a way of me helping teach people about Cam, spreading the awareness about Cam and learning that there was a big Autism family out there that I never knew existed.

But, I want more….I want to do more. One walk a year just isn’t enough for me. Don’t get me wrong, I LOVE the walk and all that it does for our community. I LOVE Autism Speaks and all the fights that they fight for us, the awareness that they spread for Cam and all of the other children. BUT and here is where my passion comes in big time….I want to do MORE for the Autism community. When Cam was diagnosed my husband and I felt so completely alone and trust me there are many, many days that we still do. But, I now have friends who have children on the Spectrum who understand our journey and I want to change the world for not just Cam but for their children too. I have a friend who has a teenage son with Autism and I want her to know that the world will understand her son and will help him and that he will have an amazing future. I have a friend with two boys on the spectrum and I want her to be comfortable going into a store or a restaurant without having to basically cringe thinking about the stares or rude comments she will get if one of them has a meltdown and they will have a meltdown because they get over stimulated. But how can they learn how to control it when she or anyone in her same shoes….including myself is afraid to go out in public because it is easier to stay home and not deal with the stares and rude comments. I have another friend who I want her to just know that her son will have the brightest future possible. I could list all of the friends…people I want to help, but I think you understand what I am trying to say. I want businesses all over to offer sensory friendly times for children and adults with Autism. I want children and adults with Autism to be able to enjoy all of the amazing things in life that “normal” children and adults can. I want parents right after they hear those words “your child has Autism” to not feel alone and like their entire worlds are coming to an end. I want them to have someone to turn to…a friend who’s been there and can help them.

Now I know I can’t change the world in a day, but THIS is my passion. I want my community to understand, love and accept these amazing children and then spread it through the rest of the world. My passion is changing the way people look at not just children with Autism but also how they look at the incredible parents who are raising these very special children. I want the word Autism to not come out sounding like a four letter word. My passion is Autism and changing the way people look at it, treat it and treat those dealing with it. What is your passion? 

Look Back

Have you ever went back from your child’s original diagnosis and read all of the evaluations, different doctor’s papers, etc? If not I highly recommend it. Not because I think looking back in life is always the best option, but when it comes to this I think sometimes it is. I did this the other day for the first time and though my intention wasn’t to read it all, I was actually just looking for a specific date of something for one of Cam’s papers I was filling out, but instead I found the answer and a whole lot more.

I started from the original diagnosis letter, September 9, 2010…the day that our life changed forever. Reading this diagnosis brought me back to that day. I had fought with everyone that something was different, unique about Cam but others thought I was either crazy or just an overprotective first time mom. But, as you moms know our mother’s instinct is something not to be reckoned with. So, on September 9 we went to have the psychiatrist that we were referred to, to have Cam officially evaluated. Within minutes the psychiatrist saw all of the signs for a diagnosis but he continued for the next hour or so to evaluate and test Cam and go over our concerns. Then he looked up and said, “your son has a form of Autism called Asperger’s and he also has Attention Deficit Hyperactivity Disorder and in better terms he is a child with high functioning Autism.” I sat there with tears in my eyes and my husband sat there stunned. The doctor looked at me and said and I will never forget it “I can tell you are crying because you knew. You knew the diagnosis before I even said it.” Yes, reading that letter brought me back to that day and again I sat there and cried. Almost three years ago and it still hits me like it was yesterday. Now you’re probably thinking “why the hell are you telling me to go back and read all of this if it caused you pain and to cry?” It’s because I didn’t stop reading there and that’s where light was shined on my tears.

I then went through reading more doctor’s visits and evaluations because you know the first diagnosis isn’t where you stop. You have to hear it from many other specialists and doctors, not just for yourself but also for all of the others who continue to tell you that you are wrong, that the doctors are wrong and that he is just fine. So, we did all of that and funny enough every doctor came to the same diagnosis. Then after all of that I read the beginning evaluations from the different therapists and read his goals. I kept reading through the past three years all of these evaluations, these goals and also the new diagnoses that come along with your child on the spectrum. Because you know Autism alone just isn’t enough, there has to be other issues, like sensory processing disorder, ADHD, OCD, etc. You name it and you found out that your child not only has Autism but he has all of these other diagnoses too. Which are all common for children on the spectrum but you didn’t know that until your child was actually diagnosed on the spectrum. But, I continue to read and yes this took quite a few hours because Cam’s chart is huge, as I am sure all of you who have children on the spectrum can relate because you all have that same chart or charts. And through it I cried many, many tears. BUT at the end of it….when I was at my last page I closed it and realized just how far Cam has come in these almost three years. I realized how far we as a family have come because of Cam in these almost three years. He has achieved goals that I never thought were possible for him. He has achieved goals that doctors and therapists never thought he could achieve. He has changed people’s views on life with Autism and he has made people stop and smell the Autism roses. So through all of these battles or struggles with him, with doctors, with insurance companies, with schools, with family….he has still come so incredibly far. We have all come so incredibly far. Some days in the beginning I felt like the diagnosis was like a death sentence because the life that we had envisioned for not just Cam but for us as a family died that day. But it wasn’t a death sentence at all….it was a new beginning. We as a family are stronger than we ever could imagine, Cam is making amazing strides in areas we never thought possible and all of us are learning our life with Autism.

So, I say to you…take the time to read all of your child’s chart and give yourself a pat on the back. Without you, your child would not be as far as they are…without you, your child would still be where he or she was when they were first diagnosed. But, they’re not….they are making progress because of you. Give your child a pat on the back for helping you see life through different eyes and give them a pat on the back for making all of that progress. I know I went in and hugged Cam and told him how proud I was of him and how very much I loved him. Of course he had no idea why and probably thought I was crazy because I did all of this with huge tears in my eyes, but he needed to hear it…I needed to tell him. I think some days are so hard that we forget as Autism parents to look at how far we’ve come and how strong we are because we fight battles others could never imagine, we deal with things on a daily basis that most will never understand….yet we get back up and continue to fight, continue to do all of this and more. So please take the time to pat yourself on the back and tell yourself how amazingly strong you are and remember sometimes looking back with your incredible Autism child is ok because it reminds you how far you’ve come. 

"I'm Excited Now"

Yesterday was a day of relief and a day that I have lost sleep over for the past year and a half. I have stressed over Cam’s schooling and what to do for what feels like forever. I have asked different specialists millions of questions, talked about it to my husband, mom and friends over and over and over and over again. His teachers last year were wonderful and he loved them. But he still wasn’t getting all of the help he needs. He wasn’t being understood and I felt like I had to explain every situation to them when I feel like some of the situations should be understood and be able to be handled differently. From the beginning of him starting at this school I have worried that they wouldn’t truly understand him and his issues. I kept him there hoping that they would, worried about a change again for him and worried about upsetting others. After going through this for a year and a half and being sick about it, my husband and I decided it was time to make the change.

So, yesterday after having a few long talks with Cam about the change over the past couple of weeks I pulled the band-aid and transferred him to the school that is best for him. Of course it’s not a definite that it is the best choice but with all of my research and discussions it feels like the best choice for him. When he and his sister were sitting there yesterday while I filled out paperwork he had already started to talk to another little boy and though he may not see him again because the little boy is in a different grade, it showed me right there that we are moving in the right direction. When talking to the staff I already felt like it was a better change and then when leaving Cam said to me “mommy, I wasn’t happy at first when you told me about this place, but now I am very excited and can’t wait for school start.” You put all of those together and I left feeling like we had made the right decision.

For the first time in what truly feels like forever I am seeing the sun in the midst of this Autism life that has felt like we’re constantly living in a storm. I feel like Cam will finally get the help, accommodations, schooling that he needs and deserves. He is excited about it and that right there makes it feel like the right decision because he doesn’t get excited about change….at all. So the sun is shining, the hope is back and life is good right now. 

I Failed

I am not sure where to start….it has been a rollercoaster of a week with Cam. I took the kiddos on a trip this week and it started off great. Midweek it completely went downhill. We had to leave a place because Cam had a total meltdown and by total meltdown I mean dropping to the floor, kicking and screaming, crying, head spinning, total out of body experience to where I had to literally throw him over my shoulder and carry him out. All of this is going on while I am holding his sister’s hand while she is crying out of sadness that we’re leaving and because she was scared by his meltdown plus all of the people staring at me and instead of moving out of my way so I could get him out of there and to a quiet place they just stood there and stared. At one point I just wanted to scream “instead of kicking me…he will kick you if you don’t move!” We finally got to the car and just sat there….all three of us crying. I hate when I let myself cry when this happens, it’s a part of our life…it happens and it’s going to continue to happen, so why do I cry? After awhile the storm settles and all seems to be ok. Move forward with the day. A few hours later another huge meltdown happens and this time he is lashing out on me and I get hurt…nothing huge but a little blood was shed and then he starts flipping out even more screaming “I didn’t mean to hurt you mommy! I am so sorry mommy!” And this is when my 7 year olds becomes like a baby and sits in my lap in the fetal position just crying and hugging me very tightly. There is my sweet boy whom I know would never intentionally hurt me. He can’t control it, he can’t control himself and he wants to. You can see it in his eyes that he so badly wants to but he doesn’t know how. So, once again the storm calms down and we move forward. Not too shortly later we went to dinner and after dinner went to have dessert and you can insert third huge meltdown here. Once again Cam drops to floor screaming, crying, kicking and once again we have an out of body experience going on. I again carry him out of there kicking and screaming and again people just sit and stare. I guess I would stare too before my life with Autism. Now when I see this happen I just offer help or move away and try to give the “I completely understand and am sending you a hug” look. We get back to our hotel room, he cries and for the first time in awhile I just completely sob. I mean I have cried, but I was crying uncontrollably. Way to be a great mom and never let him see you cry! Yeah, I know….but three huge meltdowns in one day plus all of the stresses going on just got the best of me. Thank goodness after this one it was time for bed and off to bed he went. His sister hugging me and telling me how sorry she is that I am crying, which breaks my heart even more. My 4 year old shouldn’t see me cry and say these things. So I have not only failed Cam but I have also failed her. After he goes to bed I cry more and start trying to figure out why did today hit me so hard? This is not the worst day he has ever had and this won’t be the last bad day. I start going through everything and there’s a lot of things on my mind right now. Where will Cam go to school next year? Though after talking it through with my husband and a wonderful friend who knows the schools and the help Cam needs better than anyone, we have decided where he’ll be going…but that doesn’t mean I don’t stress that I am making the wrong choice. When can I get him into be evaluated for him hurting himself? (He pinches and picks at himself so bad he bleeds and he does this constantly all over his body) Am I giving him all he needs? Am I giving his sister all she needs? Why are family members attacking my husbands and my character when we have done nothing to them but love them and be there for them? What can I do tomorrow to make sure Cam has a better day? Why do I fail him and his sister every day? Why do I feel like my husband and I are on this journey all alone? Yes, I am beyond grateful we have each other because if I didn’t have him I would be locked up in a rubber room…but even we get lonely together on this journey. Needless to say I didn’t sleep at all this night. The next day was a much better day for all of us even with my complete lack of sleep. Fast-forward to today and it started out really good. We’re back home. He’s home with all of his toys, books, daddy and his puppy. He and his sister are playing great and it was just a wonderful day. Then bam tonight out of nowhere a complete and total meltdown happens after a small fight with his sister. All hell broke loose and it was like the perfect storm hit our house. Only this time I punished him because of one of the things he did. Yes, I know Autism is only a part of Cam and I can’t make excuses for his actions because of it….but some times I just don’t know what he actually has control over and am I punishing him for something that is completely out of control. I don’t ever allow him to use it as an excuse but as his mom I should know when it is the Autism happening or when it’s something else. But tonight I am sitting here questioning my decision. Plus once again I sit here wondering all of the same questions I wondered the other night plus a million more. Right now I am at a complete loss on so many things….but I have to believe the answers will start coming and things will turn around. More importantly I have to believe that tomorrow will be a better day….

Autism Bubble

“We live in our own bubble.” Words that my husband and I joke about almost daily. But I have come to learn that those words are more true than they are just a joke. Our life is not easy and some days…ok a lot of days, I question why God chose us to live this life. Why did you think we were the right ones to handle all of these melt downs, these fights with the schools to get Cam the right help he needs…he deserves, all of these doctors appointments, all of these stares by family, friends and strangers when Cam is acting “different”, these people judging us all while never knowing or understanding the life that we live every second of every day? Yes, we love Cam more than I could ever put into words…but that doesn’t mean I don’t sometimes wish our journey in life with him wasn’t so hard. I am jealous when I see others having wonderfully happy and successful play dates and never worrying if something is going to upset their child so much that they have an out of body experience where everyone just stands and stares and under their breath says “MY child would NEVER act like that. She MUST be an AWFUL mother.” Yes, you may think that I can’t hear those words or thoughts but I can. Sometimes you don’t even have to say anything because your looks say it all. I am jealous of the parents that can go out of town or shoot just go out for a night and have fun with other grown ups…without a real worry in the world. Yes, I am jealous that our bubble doesn’t allow for any of this.

This Summer I have learned though that sometimes…ok with our journey most of the time...our bubble is the safest and best place for all of us. We can’t expect others to ever truly understand this journey with Cam because they don’t live it. I have done a lot of soul searching this Summer and realized that though I would love to have close relationships with friends and more so with certain family members…it’s just not in the cards for me or for my family right now. We have to battle things every second of every day with or for Cam and those who don’t have these same or similar struggles can’t understand. I used to think that sharing all of Cam’s struggles and accomplishments would help. But, I think it helped me more to come to terms with this life than it did with helping anyone else understand this life we live. How can anyone understand that I usually only sleep 2-3 hours a night because I can’t shut my mind off because I am constantly worrying about what doctor or therapist I need to call, what is on the schedule for the next day that could possibly trigger a melt down, who do I need to call to get things taken care of at school for him, what did I say or do that triggered that one melt down, why is he hurting himself and how can I help him to stop? All of these questions and a million others go through my mind every second of every day. I tried not talking about Autism this Summer to just see if that helped people understand our bubble…but it only made it worse for us because then we were denying and feeling like we are ashamed of our life…ashamed of Cam.

I have also realized that Cam is happy being Cam. I say this because I always worry that he is missing out by not having all of these friends, play dates, etc. But the truth is…Cam is happy playing all day with his sister and doesn’t feel the need to have a lot of friends. He is happy in his bubble…our bubble. So why should I stress about trying to get others in our bubble? We have so much we deal with already, that stressing about friends or family being in our bubble really should not be a worry. I have realized that our Autism journey can be amazing if I allow it to be. Our bubble is small, but our bubble….our Autism bubble is perfect for us. 

Birthday Wishes

July 8, 2006 is the day my entire life changed forever, my heart expanded larger than I ever thought it could and my eyes were opened to an amazing world I never knew existed. July 8, 2006 Cam came into this world teaching me so much in just a few seconds. He taught me that my life as I knew it was about to change in ways I could never imagine. He taught me that everything I knew about life was wrong and that with his one little sweet cry he was going to teach me about what really matters in life. I held him so tight and knew I was in absolute awe and love. Who knew someone so tiny could do all of this in a matter of seconds? I wrapped his little finger around mine and knew I never wanted him to let go. I sit here today thinking about that day 7 years ago and am in complete amazement for all he has taught me over these 7 years. He has not just taught me about life, but he has taught me that I have fight inside of me I never knew existed. He has taught me that I am stronger than I ever thought possible and that judging anyone is the worst thing you can ever do. Yes, at 7 years old this child has done all of this and I sit here with tears in my eyes writing this with such love and pride.

I truly never imagined being such a protective parent but Cam changed that completely the day he was born. I knew that I was now not responsible just for myself but for someone who had my entire heart, my soul…everything. I knew at that second I never wanted anything bad to happen to him or never wanted anyone to ever hurt him. I vowed to him that day while holding him so tight that I would be the best mom I could to him because he deserved no less and that he would always be my world. I promised to always fight for him and protect him. I didn’t realize how many times and people in 7 years would put those words to the test. Whether it be family, friends, teachers, doctors, strangers…you name it and I have fought to protect him, fought for him to have a better life and fought for him to have everything in life that he deserves.

The day he was diagnosed with Asperger’s and ADHD it was like a new fire was lit inside of me. A new fighter was born and those words that I said to him the day he was born came screaming into my head. Some say that I protect him too much and to those people I say…you are absolutely right. This child deserves to be protected. He deserves for his mom to love and protect him for as long as I am able. This world is scary enough for neurotypical children but it is much scarier for those on the spectrum. He has taught me that though others doubt him or his daddy and I that it doesn’t matter because we prove them wrong. We make it through anything because we do it together, even when people say we can’t. We have a bond that others can only dream about.

July 8, 2006 the smartest, funniest, silliest yet so serious, inquisitive, challenging, animal and dinosaur loving, amazing little boy was born and forever changed his daddy and mine life. He has and continues to teach us so much. We look at life through his beautiful eyes and it is amazing. He is the best big brother in the world and his little sister adores him. They are truly the very best of friends and we thank God for that bond. It is a bond that his daddy and I will do everything we can to make sure lasts a lifetime. Cam you are so much more than Autism, you are so much more than just a 7 year old little boy who has my heart, you are a little boy who I truly believe with everything I have will change the world for the better. I know you will because you have already changed your daddy, sister and mine life and we love you so very much.