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.