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.

Freeze Time

I haven’t written in awhile because I took a little break from Autism. Let me explain so you don’t think that I have completely lost it. Of course I live the Autism life every day with Cam but I needed a break from the constant talking about it, the constant explaining it and rehashing a lot of hurt that comes along with it from those that choose not to understand it. Have to admit, it’s been kind of nice. I haven’t talked about it really at all except to my husband or one very close friend who’s son also has Asperger’s and she completely “gets” my life with Cam. But not talking about it and feeling like I have to explain his every move has been kind of nice. Writing is in some ways my outlet but since I was taking a break Autism in other ways...I also took a break from writing about it too.

Cam graduated from first grade and I am so very proud of him and all of his accomplishments this past school year. He’s been on Summer break for a couple of weeks now and we’ve been having a great time so far. The meltdowns are few and far between which I can’t even begin to describe how nice that has been and when he does go to have one he’s been able to control them better….I cry with pride just thinking about how far he’s come. He’s playing so much better with other kiddos these days and even "sometimes" doing what the other kiddos want to do. He is also starting to ask questions when he doesn’t understand someone’s sarcasm or if he doesn’t understand a word someone says. These are all huge steps forward….steps I didn’t think we would see for a very long time and at some points when the bad days were far outnumbering the good days I didn’t think we’d see them at all. Some days it is honestly completely overwhelming how far he has come.

He won’t attend any Summer camps because well one, I don’t think he’s ready to handle that and two we have so much fun doing all types of different activities during the Summer that he doesn’t have much time to attend any camps. It’s also very, very hard for me to believe that he has a birthday coming up…I can’t wrap my head around the fact that he will be 7 soon. For some reason this birthday is hitting me harder than others have for him. Maybe it’s because this year we have seen him struggle so much in many different ways yet we have seen him come so far in other areas. We usually celebrate with a big birthday party, growing up birthdays were always a huge deal in my house so it’s something I wanted to pass down to my children. And so far I think I have succeeded in that area. Cam usually picks out the theme, we get a HUGE waterslide, invite tons of friends and family and he is always SO very excited about it all. That is until everyone gets here, then he seems to want to sneak away to his room and just enjoy it from afar. So this year because of several different reasons we didn’t want to do the whole party thing and I thought he was going to be really upset about it, even though when everyone gets here it's as if he wants them all to leave…but he wasn’t. Again HUGE step for him! He understood that we would still celebrate just in a different way. The different way is what I was worried he wouldn’t understand. But, we let him pick the way and he was completely happy about the change. As his mom I always want everything to be perfect for him and I always want to make him feel very special….I always want this for both of my children. So I think this change this year was/is harder for me than it is for him…which I am so very proud of him for. I am just the mom who wants the world to celebrate what I think are two of the most amazing days in history…the birth of both of my kiddos.

Now I sit here wondering….how is it possible that he is making such wonderful leaps forward? How is it possible he will be 7 soon?! Why can’t I just freeze time right now? We have struggled through SO much these past few years with him and we still do, don’t get me wrong but the struggles are getting easier in some ways or maybe we’re just learning how to better handle them. Not sure exactly what it is, but one thing I am sure about, is that he is moving forward in such an amazingly good direction that I would like to freeze these moments right now. I want time to stand still because I feel all of us in this house deserve these good moments to last forever after all that we've been through. Some days I REALLY do not like Cam's Aspergers because of the struggles I watch him go through, the fights he has to fight that other children or adults will never understand...honestly the list could go on. But on those days I try and remind myself of days, weeks like we've been having and remind myself that we celebrate these times and appreciate these times so much more because of the struggles and because of his Asperger's. So for today I want to freeze time...I don't want my "baby" to be turning 7 soon or heading into second grade (Lord help me when he graduates high school, college, etc if this is how I feel for graduating first grade and is turning 7...lol) and I want to freeze the time right now where we are celebrating the positive leaps forward that he is making. 

SO PROUD!

Over the past few days I have been busy helping in different ways at Cam’s school for all of the end of the year celebrations and out of nowhere it hit me hard today that I will soon have a second grader in the house. Now, most will say it’s just second grade. But it’s the fact that he is growing up, moving forward and making such huge progress. When I look back at where we started at the beginning of first grade and I see all of the progress he has made socially and academically my eyes fill with tears of pride. At the beginning of the year he had no friends, he had meltdowns more than he didn’t, he yelled out all the time and he hated being at school. I cried every night because I wanted to make it better for him and I wanted his life to be easier. Some days I can honestly say I do not like Autism and the struggles that I watch Cam and all of our children on the spectrum go through and at the beginning of the school year I REALLY did not like it at all! I didn’t feel it was fair that my child has so many more struggles. (I still don’t feel it’s fair…)

But today as I was dropping him off to class I stood there and watched him talking to the other children in the class, something that he never did in the beginning of the school year. I stood there with pride as he was talking to them about what they were holding and asking them questions and showing interest. Things like this do not come easy for him, but he was doing them. Then I talked to his teacher about how far she thought he had come this year and how she believes he is very ready for the second grade. Academically I was never too worried, he’s a very smart kiddo. (Yes, I realize I am biased because I am his very proud mom…but his teachers also believe this too.) But socially from the beginning of the school year I was very concerned. I was crying and having anxiety on whether or not he was going to be ready for second grade. Recently though it’s like the stars aligned and things started coming together for him. His meltdowns at school are far and few between. His calling out isn’t nearly as bad as it was AND he’s making friends!

He still has a long way to go with certain areas, but today I am not looking at any of that. Today I am celebrating how far he has come and how proud of him I am. I am celebrating that I will soon have an incredible second grader in my house and that we have a fun filled summer break to enjoy and play dates to have with some of HIS friends! As I sit here and cry with pride I am celebrating that we made it as a family through this year, the ups and downs…we all made it. I am celebrating and beyond thankful that he has had two incredible teachers who never gave up on him, who fought for him and who TRULY believe in him. I am thankful that he is making friends and that these friends are accepting him for him. Cam is one awesome kiddo and I am beyond proud of how far he has come this school year! 

He's just a boy...

“My son has Asperger’s.” That is a sentence I usually start with when discussing Cam to pretty much anyone. Now don’t get me wrong I don’t say “hi, my name is …. And my son Cam has Asperger’s.” But I have always felt like I needed to be up front and honest about it. I have always felt like saying it would help them understand him…that is until recently. Now I have started to observe that it causes some people to treat him differently and not in a good way. Now, I am sure this has been the case for awhile and maybe I just wasn't "seeing it" because I was still so overwhelmed with other issues we had going on. And it's not like they're bullying or not accepting him, but just differently. Ok, now you’re like what the heck are you talking about? So let me try to explain. Cam is a 6 ½ year old boy who just happens to have Asperger’s. He is not an Asperger’s boy who just happens to be named Cam that is 6 ½. Have I completely lost you yet?

Cam can play rough sometimes. But don’t most 6 ½ year old boys play rough? If my husband or I tell him to stop he does…so why is it that people only remember Cam playing rough and not other children? Cam can yell loudly when playing sometimes. But again, don’t most 6 ½ year old boys do that? And again, he listens when told to stop. I have observed parents of other children though watch Cam closer when he’s playing with their children than they do when their children are playing with others. I see them jump quicker if Cam plays too rough or yells too loud. I observe them talking to Cam like he’s a young toddler instead of like he’s a 6 ½ year old boy. Which got me to start thinking, have I done this to him? Have I caused these people to act like this and treat him differently because I have shared with them about his Asperger’s? Am I being too pro-active by trying to be his advocate so much that I have now done the opposite…instead of help him I have hindered him? Have I pointed out his differences so much and not showed you how he really is just a little boy?

My husband and I don’t treat him any differently than we do our “neurotypical” daughter. They both get in trouble for the same things. They are both expected to have the same manners and do the same type of chores. We do the same things with both of them when it comes to activities. We have never looked at him any different…Asperger’s is a part of him…but it doesn’t define him. He is a little boy who loves animals, swimming, playing with his friends and sister. He has a ton of energy…but he’s a 6 ½ year old little boy. What boy his age doesn’t have a ton of energy? Does he have meltdowns sometimes? Yep, he sure does. Does he sometimes say things that are inappropriate? Yep, he sure does. But if I didn’t tell you he had Asperger’s would you give him the same “I can’t believe he just did that” look? No, you wouldn’t, because you would either laugh because you would think it’s cute and funny or you would just think I can’t believe he just said that but he is young so he still has time to learn. Can he be socially awkward sometimes? Again, yep he sure can. But he’s just doing what everyone including adults do, which is just trying to find his way in this world. He wants to fit in and he wants to have friends. Is that really any different from what a “neurotypical” child does?

Now don’t get me wrong, I understand that Cam has some silly quirks and he has some different struggles because of his Asperger’s. However, I won’t let it define him and I won’t let it be all that people see. I won’t allow people to treat him differently because of it. He is a 6 ½ year old little boy…a little boy who will change this world. Isn’t that what we all believe of our children? It’s what I think we should ALL believe of them. Just because he has a diagnosis doesn’t mean he should be treated differently. Maybe it is my fault that he has been treated or looked at differently. Maybe I shouldn’t be so vocal and tell people right away about his Asperger’s? If that is the case then it is my job to change it. I don’t want parents watching him closer or treating him differently. I want him to be able to play without eyes glaring and people ready to pounce if they even think he’s going to do something wrong. He’s an amazing child and that’s what I want everyone to see.

Happy Anniversary

Today my husband and I celebrate six years of marriage. From the beginning we started things off backwards. We had Cam before we got married. As you can imagine that really upset some people. We of course had talked about marriage and children and knew that one day both would happen for us, we just didn’t realize so soon on the children front. But, Cam was NEVER an “oops”, he was the best surprise that has ever happened to either one of us. We hit hurdles together right away after Cam was born. We weren’t married, so relatives were upset about that, they didn’t fully accept our relationship because we did do things backwards, so needless to say from the beginning we have dealt with so many different hurdles. We thought once we got married some of these issues would get better…easier…needless to say we were very wrong.

Our marriage has dealt with and continues to deal with relatives issues, Cam’s Autism diagnosis, Cam's therapies, issues and melt downs, our daughter almost dying the day she was born, a Cancer diagnosis to one of our relatives, job and financial struggles, my own Cancer scare, you name it and it seems that it has been thrown at us. The struggles have at times appeared too much for any relationship to endure, but at the end of the day we made our vows and we took them seriously. Marriage is never easy, but it is worth it. It is worth being married to my best friend who loves me no matter what. It is worth spending my life fighting the fights with him because together we make an amazing team. I could not imagine enduring any of this with anyone else.

My husband doesn’t see the same person I do when I look at him. I see an incredible man who has defied so many odds in his life. I see a man who others doubt and they should be ashamed of themselves for doubting. I see a man who loves his children more than anything in this world and they adore him right back. I see a man who makes me laugh when all I feel like doing is crying. I see a man who knows just what to say when I am feeling down or like a complete failure to lift my spirits. I see a man who works so hard and tirelessly for his family. I see a man that even when I am at my worst loves me anyways. He doesn’t see all of this in himself, but I do.

Our marriage may have started off backwards in some people’s eyes, but to us it was the best way we could have ever started our family. 6 years later we have defied many odds, been down many roads that we wished we would never have to travel, cried and laughed together and have two amazing kiddos. Today we sat and played board games and laughed with both of our kiddos. Today we smiled because together we have made it through all of this and we smile even bigger because we know that no matter what, we have each other and we have these two amazing children and though our road isn’t easy, together we will make it through anything. 6 years have come and gone, but our love, our trust, our bond has grown stronger than I ever imagined possible.