Pity Train....

I have been in a bit of an Autism funk lately. Yep, I stepped on the pity train last week and am trying hard to get myself off of it. Last week Cam had a bit of a hard week, nothing horrible at all and by far the best of the worst that he has had in forever. But, for some reason it hit me really hard. Then on Thursday I said those words…words that I have sometimes thought but have never put it out there to the world. I HATE AUTISM! And I meant it. I have lots of rainbow sunshiny days where I see all that I have learned thanks to this Autism journey. I sit back and see the fighter that I have become, the way that Cam and Autism has helped me to open my eyes to a new incredible world that celebrates life’s miracles that most take for granted and I see the mom that I am thankful to be because of his Autism. But then there are days or weeks where I really don’t like this journey and yes to be completely honest hate it. I hate that every day when I drop my son off at school I worry about his meltdowns, his awkwardness, his struggles…the list of worries go on and on. I hate that every day when I pick him up from school I have a lump in my throat waiting to hear how his day was and I hate that I can’t be the parent who can just pick her son up without having to feel like I have to hear every detail of his day to know what, if anything set him off, what struggles did he have, did he have any meltdowns or did he have a great day. I hate that when we have a friend or friends over with their children my heart is in my stomach again, worrying the entire time about how he will act, what will he say that they take offense to because he has no filter (good and bad thing here) and sometimes what he says is not what he meant. I hate that I feel like we have to live in a bubble away from most of society because we have lost so many friends along this journey, whether because they judged and I couldn’t take the judging, the looks, the whispers behind my back. Or because I have separated myself because out of fear of the judgers I have detached myself from most of the world not wanting to get hurt or judged any more. This journey can be very lonely because no one, not even those that are also on the Autism journey with their children can completely understand what I am going through because each of our children are so different.

So, yes I am on the Autism pity train right now. Yes, as much as I try to be positive about it all, I have my times where I just can’t fight the hate or anger.  What’s funny or ironic about it right now is Cam is doing really well. I shouldn’t be feeling this way, yet I do. The struggles are still there even when he’s having amazing days. The fighting that I have to do for him is still there even when the journey is still full of rainbows and that is what I hate. In most cases for neurotypical children when they are doing amazing parents get to enjoy it. But when Cam is doing amazing it is much different than those children. The hate will subside and the rainbows and sunshine will come back out…..right now though I am working through the hate. 

Big Steps.....

Can you believe it is almost the end of January already? This month has completely flown by! Over Christmas break we started Cam on new ADHD medicine. (I get it if you are against medicine, but this is a judgment free zone and I know what is best for my kiddo) So, over the break when he started the new medicine we started to see a huge change in Cam and when I say huge…it was as if I had my sweet, loving and funny boy back. His old medicine worked for a while but he started having huge meltdowns and aggression out of nowhere. So his neuro decided to change his medicine and see if that would help. It helped so much more than I could have ever imagined. But, then school started up and though I knew he was doing great at home, I was concerned that school was going to be a different story. Well, we are three weeks into school after Christmas break and he has been doing amazing. The teacher said it is like a different child has entered her room and she can see a huge positive difference in him. I have cried happy tears every day picking him. Which may sound a bit crazy, but let me remind you that my son was kicked out of 3 different pre-schools, kindergarten at his first school wasn’t easy and we have hit many, many, many did I mention many hurdles since. So, when I, as his mom am so used to hearing nothing but negative about my son and his issues, start hearing such positive reports after so many years of negative, of hurdles and struggles, I cry many happy tears. I as his mom see all of the good that others miss, I see past his diagnosis, his differences, his struggles, but most others don’t. Others always focus on the differences, the diagnosis, and the struggles. I have had so many different teachers, friends, family members, strangers point them out that you would think I would become numb to it, but really it hurts more and more each time. But, now my son is having good days, shoot we’re hitting good weeks at school and finally I am hearing praises. I honestly never thought I would hear “he had an amazing day” or “he received extra computer time for having such a great day”. Words like that are foreign to me, which is sad but it is true. Most of the time my son isn’t given a chance because they see his diagnosis and his differences first and don’t see the rest of him.

So, since school is going so great I decided to throw something else in the mix. Sports and Cam don’t go well together. He tries hard, but his coordination isn’t there yet, his ability to work well on a team isn’t there and well lets just say we haven’t had much luck over the years with sports. So last year we didn’t put him into anything. Though I will never allow his diagnosis to stop him from doing anything, I also am learning (slowly) that he just may not be able to do the things I want him to do. This year however, I decided we were going to find something extra curricular for him to do. He needs to get out there and learn how to listen to others, make friends, socialize and be a 7-year-old….Autism and all. I researched for clubs and well there just isn’t much for his age, I looked into sports and kept finding team sports or golf, both of which he has no desire or can play at this time. Then it hit me, at our Autism Speaks walk he loved the Taekwondo teacher and spent some time talking to him. So, lets throw caution and lets be honest my worries to the wind and take him to a class. I discussed via email all about Cam prior to the class and the instructor didn’t run away, so I thought that was a good sign. Cam was so excited when I told him about the class. He was on count down the day of; every minute after I picked him up from school I heard “is it time? Can we go now? How about now?” It was cute and heartwarming and shot my nerves into full force all at the same time. Off to class we went. We had a long talk in the car about listening, doing as he’s told, etc. We got there and I could see the nerves in his little face. I kept telling myself to hold it together (shockingly I did) and reminding myself it is good for him. Class began and I held my breath for most of the 30-minute class. My nerves at this point were out of control and my worry was on overdrive. But, he did great! Did he stumble? Yes. Was he awkward? Yes. Did he give up? NO! Did he love it? YES! Even though it was hard for him and he was completely uncomfortable with new kids, new teacher, new place…he did amazing and even better he asked me to promise to take him back to the next class. Which of course I said yes, cried behind my glasses in the car with pride and celebrated with a little happy dance when we got home. Who knows if this will be the “thing” that is right for him, but no matter what he is excited, he wants to do it and he is willing to try it. Right now, at this very second, that is all that matters to me.

I told my husband on New Years day that 2014 is going to be our year. We have had one hell of a ride on this Autism rollercoaster, put other life issues being thrown at us and everything in between and I believe we deserve a great year. Cam SO deserves one. At the age of 7 he has had so many people against him, differences thrown at him, people not wanting to understand him….dang it he deserves an amazing year! This is a year of positive changes, positive thoughts and dang it awesomeness for my not so little any more guy and our family. Autism rollercoaster….this year you are going to be good to us! 

Entering His World

  Christmas has come and gone…which in itself is hard to believe.  This year Cam was more into it than he ever has been, which made the holiday with him and his sister so much fun. Christmas morning came and knots came to my stomach. Will he like what Santa brought? Will there be a meltdown because it is too much? Worry and knots filled me starting around 2 am when I couldn’t sleep out of excitement to see their little faces in the morning and also out of worry. Then around 6 am I got the best Christmas present I could have ever asked for…Cam came running into our room screaming, “Santa came mommy!! Santa came!” He was SO excited and it just went uphill from there. Each present he opened he was grateful for, he was excited about and he just enjoyed the entire morning. He is typically a grateful child just doesn’t know how to show it and if he doesn’t like something you know it right away. But, this morning was different. I could tell how grateful he was in his sweet little face and he kept screaming “thank you Santa! This is the best Christmas ever! Thank you Santa!” It truly was a magical morning.

  For Christmas one of Cam’s big presents was the game Skylanders Swap Force. Now to be honest I knew nothing about this game really, except that it was one of the only big things he wanted for Christmas and that for the past three years my son has loved anything that has to do with Skylanders. But when it comes to the heroes, villains, etc I haven’t a clue. Well, that is until now. Cam asked me to come in and play with him the other day and I said I would but that he had to promise he wouldn’t get mad at me when I didn’t have a clue what I was doing. He promised and off I went into Skylander world with my son. About an hour in I realized why he loved the game so much and there he and I sat laughing and spending some really great quality time together. I entered into my son’s world instead of making him enter into mine. I am sure that sounds a little bit crazy so let me try to explain. Since Cam’s diagnosis I have made it a mission to always make Cam come into our world, not stay isolated and not allow him to use his disability to avoid anything. But, I believe in my whole learning to be ok with his Autism that I discussed in my last blog that this is a part of it for me. Going into his world and not forcing him to just be in mine. So we sat and played Skylanders for a couple of hours, his sister at one point even came in and cheered us on, laughed with us and she helped me in some areas that I didn’t have a clue what I was doing. I typically don’t allow him to play any video game for that long, but this time was an exception. For the first time in what feels like FOREVER I felt like I was a part of my son’s life….a part of HIS world not a part of the world I make him be a part of. When I told him it was time to stop playing there was no meltdown like there usually is, he stopped playing and came out and we played board games and just had fun…something that we haven’t done without meltdowns or attitude in a very long time.

 So I decided to continue going into his world. After all it really wasn’t so bad. So each day since Christmas he and I have played Skylanders and we have laughed and we have bonded. What is funny is that he hasn’t wanted to just play that, now he has wanted to do things his sister wants to do, things that I want to do, he has been more at ease with everyone. Maybe I am wrong…but I think finally allowing him to be him and being a part of his world has helped him feel a little bit better about himself and has made him a happier little boy. Only time will tell….but for now I am enjoying being a part of his world. 

Reflecting...

With Christmas right around the corner it has been making me reflect on the past year…the good and the bad. It is hard to believe but it has been 3 years since we “officially” started this Autism journey. Of course I say official because I knew way before Cam’s diagnosis that something was different about him, but until the doctor said those words it was a completely different journey we were on. Now 3 years later the journey is forever changing, but this past year I have learned more than I ever thought possible.

This past year I started to let go of the anger that was inside of me because of the diagnosis. I started letting go of the sadness of the life that I dreamt of for Cam that will never happen. I didn’t realize until this year how very angry and sad I really was. I had kept saying to myself and everyone else that I was ok, but I never really dealt with it all. I just pushed forward and kept everything inside and hidden from everyone…some days even hidden from myself. But, while doing this I didn’t realize the angry person I had become. Until this year, I didn’t realize that I had become the sad, angry and bitter person I never wanted to become.

Once this realization hit me and let me tell you when it hit me, it was as if a mac truck had run me over. There were a few incidents and a couple friendships broken and one day I looked in the mirror and realized I was allowing these emotions, these very deep feelings to destroy me. And when I say it hit me like a mac truck, that is truly an understatement. Looking at myself in the mirror, crying and realizing I had become this type of person…it is a hard realization.

This Autism journey isn’t easy and most days it is so easy to get caught up in the hours of melt downs, the therapies, the doctors appointments, the constant parent-teacher conferences, the dirty looks from others, the whispers that you hear others say about your child as you walk by, the difficulties for your child that you never wanted…it just all gets overwhelming and it is very easy to allow it all to consume you and become angry and bitter. People who say they understand, unless you live it, eat it and breath it…you can never understand it. And that also made me angry and bitter…people who didn’t understand our lives. How could they judge something they have NO idea about? How could they say they understand…when in reality they never will?

But, once I got hit by that mac truck my outlook changed, my attitude changed and my life started becoming a little brighter. 2.5 years into the journey…better late than never, right? I started accepting this Autism journey for the good and the bad. Not just living it…but accepting it and being ok with all of it. I stopped apologizing for Cam and his “quirks”, his meltdowns, his non eye contact…you name it and I stopped apologizing for it. I stopped apologizing because I am not sorry for who he is. This was HUGE for me because I apologize for EVERYTHING….even things that I have no control over. I am just a person who doesn’t like to upset anyone, so I automatically take blame for things. BUT, with Cam there is no blame to take…this is my son…this is who he is, meltdowns, quirks, non eye contact and all. If I don’t accept him and stop apologizing for who he is, how can I expect anyone else to? Let me tell you how amazing this has felt. I wish I could describe it, but the only way I can, is to say that I feel like the weight of the world has been lifted off of my shoulders.

Then came the realization of the anger, the bitterness and to be completely and totally honest…the jealousy of friends and family with their “normal” children. I was angry with them for not having these struggles. I was jealous that their children were able to do the sports that Cam may never do, the play dates with no worries that I so wish Cam could have or the life that I had dreamt for Cam…their children will have that life but Cam won’t. I was bitter that they would complain about their children for things that I wish were my only worries and complaints for Cam. BUT, again I started to let this go and what a liberating feeling this is. I can’t be angry or bitter or jealous because it is not their fault that they or their children are not on this Autism journey. What do any of these emotions accomplish? Well I can tell you what they accomplish…loss of friendships, loss of myself…a pretty lonely world.

Now, I am not trying to say that all of a sudden I am walking around with rainbows surrounding me. I still have days that I am angry, bitter and jealous. But now they are less and now when I have them I try to remind myself of all the amazing things this Autism journey has and continues to teach me, show me and help me appreciate about life. No, it isn’t easy and no writing or talking will ever be able to explain our struggles BUT it is also pretty amazing. We celebrate the small things, we celebrate the big things, we celebrate pretty much everything because if it’s worth celebrating it’s because it has taken Cam a lot longer to get there and sometimes it’s to celebrate him doing things, accepting things, saying things that we never thought he would or could do. This year has been a liberating year, a year of letting go and moving forward. It was as if I had allowed my dreams for Cam to die when in reality I just needed to allow them to change. I needed to work through the anger, bitterness and jealousy once and for all to enjoy the incredible life that I do have with Cam.

2013 has been a learning year for me, a growing year and an accepting year. I won’t allow myself to look back, to wish I hadn’t been that angry, bitter, jealous person to continue to look at all of my mistakes on this Autism journey, because one, it isn’t easy and we all have to mourn in the beginning in our own way and though we are three years in, it is still the beginning and also because had I not been that person I wouldn’t have learned the lessons I have. I saw a bumper sticker the other day that said “Autism….it’s not for wimps” and I laughed and said to myself “aint that the damn truth!” It’s not for wimps but it makes all of us that are on it, so much stronger than we ever thought we were and it teaches us…no matter how long it takes us to get there, that we as our child’s advocate, mother, friend and cheerleader can get through it. Once we stop mourning the life we wanted for our children and start to accept the wonderful life that they have, it is amazing the true happiness and true joy that comes into our lives. Or at least it has for mine. 

I Don't Want It!

Today was report card day. Which typically with Cam is no big deal. He always does great academically, so when the report card comes I usually don’t worry. Well, that changed today. He is still doing pretty well academically but I did find out he is struggling in a couple of subjects that I did not realize he was. But then the other side of the report card for behaviors was basically saying he is awful. It broke my heart, it shocked both my husband and I and it hit us both like a ton of bricks. I usually don’t go over each one with Cam as like I said before he has never had a huge issue. Issues yes, but nothing like this. So, today we went over each one with him. This is where the day took a completely horrible turn. My sweet 7 year old sat there crying his eyes out and screamed “I am just a loser!” Want to talk about hitting a mom in the heart. I stopped going over anything and tried to tell him how very much I love him and how amazing he is. I tried to tell him that together we will work on all of these things because his dad and I know that certain things are harder for him than they are for others. Well, I guess I said the wrong thing because right then he ran off screaming, crying and slammed his bedroom door. This is usually what he will do when he is upset and I know he just needs to get it out. But this time was different. This time we heard him screaming, “I hate my Asperger’s! I don’t want this life with Asperger’s! It isn’t fair to me! Asperger’s makes me stupid! Asperger’s makes me a loser! I want my Asperger’s to go away forever!” And there I stood by his door with tears streaming down my face. I could barely breath because hearing those words took every breath right out of me. My husband knew there was no way I could talk to Cam at this point so he did. He went in and just held Cam and told him how very much we both love him and how Asperger’s doesn’t make him any of these horrible things. I was finally able to compose myself (way to hold it together…I know) and then it was my turn to just hold him and hug him. As I am hugging him trying myself to remind him how incredible he is, how very loved he is, he says “I can’t be any of these good things because my Asperger’s makes me horrible and God must hate me because he gave it to me.” Tears for all three of us start flowing and I just held him. As my husband and I sit there with him, all we could do was tell him how much we love him.

I question God a lot on why our children on the spectrum have the struggles they do. So, I can completely understand my Autistic son questioning him to. I watch my son struggle daily and cry for him more than once a day because of these struggles. He tries so hard to be like other children but he never will be and he knows it. I watch as other children make fun of him for his differences and it kills me inside. Yes, I usually try to be super positive about Autism but there are many days…days like today where I hate that my son has it. I hate that any child has it. To hear my son scream those words, to see his struggles, I hate that part of it. Of course I love him…all of him. I just hate that his life isn’t as carefree as other children’s lives are. I hate that his life will never be that carefree. I listen to parents of neurotypical children and I want their problems because compared to Cam’s they are so easy. They for the most part will live a very normal life…one that my son wishes he could have.

By the end of our hour-long hugging session, I want to believe Cam was feeling a little bit better. His sister who is absolutely amazing and at the age of 4 has a heart most adults should have came out of her room and said, “I love you more than anything in the world and I love your Asperger’s.” She has no idea what Asperger’s is, but she understands enough to know it is something that makes things in life harder for her brother. They played and I heard the two of them laughing and playing together as I sat on the couch crying. I want so badly to make his life easier. I want more than anything to take away his pain. Tomorrow will be better….not easier but better. 

Tomorrow is for YOU

In January I was asked to be one of the chairs for our local walk for Autism Speaks. I had been on the committee the past couple of years, but honestly had never thought about stepping up to be a chair. I said yes without much hesitation and to be honest without much thinking of what this role was all about. All I knew when I said yes is that I had a passion for the organization, I had a love and desire for my son to be accepted completely by others and that I wanted to make a difference for all families of children on the spectrum. So, I said yes and then started a journey I could have never expected.

This journey has had many bumps along the way. I have seen sides of people that I never imagined I would see. Charity brings out peoples not so pretty colors sometimes. Which until this past year I didn’t realize it could do. To me charity should only bring out the positive in people. But, along the way I learned not everyone has the same vision as I do. I also learned that people have an amazingly generous and caring side...that though all we see usually on the news is the bad, there are still SO many AMAZING people in our world.

I have cried more tears than I would like to admit…tears of fear of failure, tears of hurt, tears of confusion and tears of total awe and amazement. When I signed on I never imagined this rollercoaster ride I was getting on. At times I questioned why I continued and the answer was always the same….I am doing all of this because I BELIEVE in this amazing organization. I am doing this because I LOVE my son more than words will ever express and I will do ANYTHING to make his life brighter, his journey easier and help people to understand him and love him just as I do. I have a PASSION to make a difference in others lives because I believe we all deserve to have help on this Autism journey.

So now we are less than a few hours away from the big day and I sit here with tears rolling down my face because I am in complete and total awe. I am in awe of the generosity of so many in our community. I cried today so many overwhelmingly grateful tears by all of these amazingly generous, caring people.  I am overwhelmed by the friendships I have made. True and amazing friendships that will last a lifetime. I will stand tomorrow with friends that a year ago I would have never imagined being so blessed to have in my life. I am in complete amazement of how much love and support my husband has given me through out this entire process. I am in disbelief that though the road wasn’t easy…we are here and I made it!

Thank you to everyone who stood beside me, who helped me, who never left my side….tomorrow couldn’t be happening without all of you!

I Want Rainbows

I haven’t written in awhile…not because we have had nothing going on but because to be honest it feels like every time I turn around something bad is happening. The same day Cam lost his great grandmother he had his EEG. Which we still have more questions than answers from…that will be for another day to write about. The day after both of these events happened we had Cam’s first IEP meeting. Insert a hallelujah dance here that after many years of fighting for him to have this…he finally does!

Shortly after the loss of his great grandmother, the scary EEG and the stressful IEP meeting, we lost our dog. Now let me explain to you that she was not just a dog…she was our family. She would have been 11 years old on October 1. She was a huge piece to our family puzzle. Explaining this to both of my children was one of the hardest things I have ever had to do. Both of my children are still coping with this loss and it breaks my heart. Every night we do prayers together and every night Cam prays that Mattie (our dog) was still here and asks God to please bring her back to him. They look at pictures of her daily, still cry for her daily and my heart still breaks for them and for our family daily because she is gone. Mattie was like a therapy dog for Cam. When he was having a bad day, a melt down or just not himself, she knew and she would not leave his side. She laid with him, loved on him when he needed it the most, she was his best friend. He has truly struggled with this loss. He has had the worst days at school he has had in a very long time and has meltdowns that have lasted hours and he hurts himself regularly with his picking. I wish I could make all of this pain go away for him and for my daughter. With my daughter though she expresses it, she talks about and I can help her. With Cam he doesn’t understand any of these emotions going on and keeps it all inside and then just erupts like a volcano for what seems like no reason.

Then last week on top of everything he got really sick. Sick, plus dealing with the death of his great grandmother and his dog/best friend, issues at school, medical tests, you name it and none of it has  been easy on him at all. Yesterday he got in trouble for something and screamed that he wishes he were dead. At the age of 7 my son is dealing with these thoughts. My husband and I had a long talk with him about these scary feelings that he is having and at the end of it I felt like I have lost him in a way and I am working on finding him again. He told us that he believes people would be better off if he weren’t here because he is a loser, he is weird and he is a horrible boy. It wasn’t a cry for attention…it was how he is truly feeling. I am heartbroken, lost and I just want to hold him forever and tell him how wonderful I think he is. I sit here crying because my son at the age of 7 has feelings that he at no age should ever have.

When it rains it pours and it has been a hurricane of bad things happening for Cam. Worst thing is he doesn’t understand any of it. He was crying and I asked why he was sad, hoping this might be the time he tells me something that is going on inside that little head of his and he said “I’m not sad.” I asked why he was crying and he just told me he doesn’t know. The truth is, he doesn’t know. The truth is as his mom I can’t take this pain away and I want to more than anything in this world. So badly I want to. On the way to school today he asked me why God wasn’t listening to him and bringing Mattie back to him. He told me he doesn’t think God understands that he needs his best friend back. How do you explain to your child these things about life that half the time we, as adults do not understand? His days have been bad, his meltdowns have been horrific, his body is covered in cuts that he has given himself from picking at himself so much and I just want to take all of this hurt, confusion and anger away for him. I know life is hard and I can’t make it all about rainbows all the time. But at the age of 7, being an Autistic child, struggling in this cruel world I wish I could make it all about rainbows for him.