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. 

I Want to Run Away....

Cam stayed home today after a night of no sleep. He was up literally all night and when I asked him what was wrong he just told me he wasn’t tired. I figured sending him to school would end in disaster so decided to avoid that disaster. He was all out of sorts with me all day but I didn’t push him as to what was wrong because I had a feeling I already knew.

His speech therapist came today and he was off with her also. But he said something to her that helped me to realize that I was right; it was because he is confused as to the news we shared with him about his great grandmother last night. After his therapist left he got upset with me about asking him to do something and ran off to his room. This is typical for him when he gets upset and I have learned to just leave him alone until he comes out and is ready to talk. So I started to vacuum when all of a sudden his sister walks up and says “I tried to give him a picture and he is crying and says he is going to run away because our family would be better if he did and because he’s weird because he has Asperger’s.” What?! Immediately I ran into Cam’s room to talk to him. He’s crying and he tells me that he wants to run away and leave our family because we would be a happier family without him. He continues to cry and tells me that he wants to go away forever because his Asperger’s makes him a freak. Heartbroken doesn’t even begin to describe how I was feeling. I tried to tell him all of the wonderful things about him because of his Asperger’s. I talk about his incredible knowledge of dinosaurs and animals, his memory, how smart he is and his ability to memorize movies and books. Then he starts to ask if his Grandma and Grandma and Pop Pop love him because he asked me “how could they love me when I’m a weirdo with Asperger’s?” I thought last nights conversation was the hardest one I was going to have with him for a while..that was until tonight. I tried with everything I have to reassure him that everyone in our family loves him, that everyone in our family would be beyond sad if he ever ran away or if anything ever happened to him. “Maybe they love others (he named certain family members) more because they don’t have Asperger’s.” “Maybe it would be easier for you and daddy to just have Peyton.” What have I done wrong that he feels this way? Why is he feeling this way? Where is all of this coming from?? I hugged him as tight as I could, tell him how very much we all love him and how amazing all of us knows he is. I didn’t want to let him go.

I am really at a loss tonight. I know he doesn’t understand all that is going on from our conversation last night and he must be having questions about that and now he is struggling about his Asperger’s. I sit here with my heart crushed for my son. He is seven years old and going through all of this inside and there is nothing I can do to make him feel better. I want to have the magic to take all of this hurt away from him, I want my son to be able to have a normal life. Between all of the medical tests, social school struggles, the passing of his amazing great grandmother and just the struggles in his little life in general it isn't easy and I want so badly for it to be easy for him. He is SEVEN…he deserves it to be easy. 

September 11, 2013

September 11, 2013 was probably one of the hardest days I have had in my life. On September 11, 2013 my nerves were completely shot, my emotional overload was at its peak…or so I thought. Cam had his sleep deprived EEG this day. The test went awful, as I knew it would. Cam hates when anyone touches his head, so imagine the thrill he had when a stranger was wanting to put wires all over his head after him only having 4 hours of sleep. You can only imagine the terror in my poor sons eyes and the tears and screams that filled the testing room. I told the tech that I knew he wasn’t going to fall asleep, but she said I was wrong. (Hello! I am his mother…I KNOW him a little better than you.) But, who am I to know my own son…right? So after the torture of putting on the wires, she put on what she called white noise, which in my opinion was just really bad screeching lullabies that made me sound like a good singer, and told Cam to close his eyes and go to sleep. He held my hand so tight I thought I lost circulation in my fingers at one point and there was no way he was going to go to sleep. She “the tech” came in about 20 minutes later and told me she couldn’t believe he didn’t fall asleep. Again…HELLO! He is 7, Autistic and ADHD in a strange room with an even stranger woman, with horrible “music”…how could he fall asleep?! She then proceeds to tell me that this test gave us more questions and that means that there will be more tests to come. Insert me freaking out and crying inside and Cam freaking out in the room because he doesn’t want any more wires and tests. Thanks for scaring him lady…this will make the next tests soooo easy.

We drive home and the whole time Cam is zoning out watching Wild Kratts and I am crying. Thankfully for Wild Kratts Cam had no clue I was crying. More tests? More questions? When does it stop? Does it ever stop? My son deserves a break. Of course even after we got home he still did not fall asleep because he was wired and still a bit scared from the tests.

As my husband and I were talking about the tests and the more tests to come, he received a phone call from his mom. This is when the bad day that I was having…the pity party that I was having not only for Cam but for myself ended and a piece of my heart broke. The call was to tell him that his grandmother, my children’s great grandmother, a woman who will forever hold a huge special place in my heart passed away. I held it together as my husband prepared to go be with his family, but the second he left I dropped to my knees and completely lost it. He and I had just gone to see her the day before and I was able to kiss her head, whisper how much I love her as she slept and stare at her beautiful face. I was so blessed to have this woman in my life, my children loved her and were beyond blessed to be able to share so many years with their great grandmother. You think you are prepared for something like this…but you never truly are. How can you be really ready to lose such an incredible person?

We decided to not tell the children right away because we were both not emotionally ready to. We were just trying to wrap our head around all of Cam’s issues plus this loss. So tonight we decided it was time. We sat Cam and his sister down and told them. Telling them was one of the hardest things I have ever done. I could see the confusion in Cam’s eyes and his sister who is only 4 years old started to cry. To be honest I didn’t think she would understand, but she did more than I could have ever understood at her age. I let them ask questions and while his sister was crying and asking questions, Cam just sat there for a little while staring at me. Cam’s first question brought me back to reality with him and his emotional understanding. “Mommy, this is what sad feels like isn’t it?” It broke my heart into little pieces. He doesn’t understand these feelings and I wish I could fix that for him. We sat there and talked for a while about all of the good memories we had with her. You don’t realize what an impact a person has on your child….she had such a wonderful impact on them. We talked about heaven and how they believe she is with God now. Their questions were simply amazing to me. Then Cam said something that I will never forget…he looked at my husband and said “I will miss great grandma but I know her spirit is always with me.” I was completely in awe of my son at this moment. He then looked at me and said “mommy I don’t know how I know this but I just know.” We talked a little more about our times with her and how much we are all going to miss her but we know she is now a beautiful angel watching over us.

I wish I could express the emotions that I felt as I walked away from my conversation with them, but it left me in awe and speechless. What I do know is that my husband’s grandmother, my children’s great grandmother and the woman who will always have a piece of my heart will be greatly missed by us all. Cam’s sister wants to send her cookies in heaven because she said she knows she loves them and Cam wants to send her a picture he colors because he said she always loved it when he did that for her. These are beautiful memories or her that my children will always have and I am forever grateful for that. 

This blog post is dedicated to an incredible woman who is loved and missed so very much! We love and miss you great-grandma! <3

Those Words!

Is any other Autism parent tired of hearing “it’s common with children on the Spectrum” when it comes to something bad happening to your child? I am so tired of hearing it. Every time I take Cam to the doctor because of a concern I feel like I hear that sentence. Today was no different.

I picked Cam up from school and off we headed to the neurologist. We were talking in the car and celebrating that he had the best day at school he has had since the beginning of the school year. All was great on the ride there. Get to the office and still is ok until we get taken back to the room. The nurse goes to take check his blood pressure and it is a blood pressure cup that is attached to an entire system of other things that scare the you know what out of Cam. So she starts it up and he starts to freak out because it is hurting his arm. I try to calm him down and it just continues to get worse. Now she can’t get the machine to turn off and my son’s arm is turning different shades of red and the tears in his eyes are now streaming down his face and he’s screaming that he wants it off and he wants out of there. After what feels like forever she is able to get it turned off and off of his arm. He started yelling at her that she shouldn’t put things on him that will hurt him and that she needs to go away. Thankfully she was done and told me that the doctor would be in shortly. I was able to get Cam calmed down and then in walks the doctor. Complete freak out number two. Cam hasn’t had many meltdowns at all lately so this caught me by surprise. But I sat there trying to get him to literally stop climbing the walls in complete fear as he was screaming for the doctor to go away and that he just wanted mommy to take him home. It took all I had to not completely break down with him. I felt awful and there was nothing I could do for him. We HAD to have this appointment. So after some time, the screaming, crying, climbing the walls and after trying to bolt out the door he slowly calmed down and I was able to give him my phone to play with.

Here is where those words….those words that are like nails on a chalkboard to me came in. We were discussing some of Cam’s issues and one of them is he completely blanks sometimes, forgets what he’s doing and this is a big concern to me. The doctor right away goes through certain symptoms with me and says he may be having Absence seizures and “these are very common with children on the Spectrum”. Then we go over the tests Cam’s going to need to see if this is in fact what he’s having. And as I am trying to wrap my head around this, he again reiterates that these are “common to children on the Spectrum” and that Cam’s life will always have these hills for him to overcome. Of course he said this nicer than the way I just put it. But as I was sitting there holding back tears, wanting to just take Cam and run because I didn’t want to deal with any of this…it didn’t matter how nice he told me anything.

Why is it that my child who has so much already against him can’t catch a break? Why does he have to have all of these other “things” that are “common for children on the Spectrum”? Why does he have to have anything else to battle? Why does he need any other hills to climb through life? Is it not enough to be Autistic? Is that hill not enough for him? Maybe it is just the fear of the unknown right now, but I just think it is unfair to my son….to all children on the spectrum that there are so many other issues that are “common” for them.

We will do the oh so fun (insert LOTS of sarcasm here) sleep deprived EEG next week and then go from there on what other tests he will need. There are other concerns that the doctor had, but this is the first one to tackle. We will get through this as we do everything else…but it doesn’t make hearing those words any easier and it doesn’t make the fear of the unknown go away. 

Success!

Complete Success! Yes, that is how I would describe Cam’s play date with his FRIEND! Cam woke up the other day so excited! He picked out his favorite t-shirt, got his toys ready and waited with anticipation. The little boy’s mom dropped him off for the play date and the boys started playing their favorite video game together right away. I sat here in our living room listening to my son laughing and talking game “strategy” and I cried. My husband smiled at me because he knew how excited I was for this day. I cried tears of joy listening to their little conversation, I cried tears of joy that this little boys mom wasn’t “scared” to leave her son here to play with Cam because he is “different”, I cried because I never thought this day would come. There was no one watching every move Cam made ready to pounce on him for doing something wrong (yes I have witnessed other parents staring at my son waiting for him to do something “wrong” because of his diagnosis…sad but true), there was just two little boys playing and laughing.

I checked on them several times…more out of selfishness really. I just wanted to see Cam’s little face so happy to have a friend over and playing with him. At one point Cam got very frustrated with the game they were playing and started to meltdown and instead of the child getting scared or getting mad, his friend simply asked Cam what was wrong and helped Cam work through it. Insert more tears here. This little boy helped my son and then continued to want to play with him. He didn’t ask to leave and even when I asked him a little later if he was ready for me to call his mom to come pick him up his response was “no thank you, I would really like to stay a long time to play more with Cam.” Happy dance!! He is looking past Cam’s “differences” and seeing the great boy that I see! They played video games, they watched Power Rangers, played outside, played with toys and not once got tired of each other and not once did the little boy want to leave.

Six hours later and they were still playing when his mom came to pick him up. They had so much fun and neither one of them wanted the playing to end. In fact the little boy asked when he could come back and maybe have a sleepover! Cam jumped on that idea and asked for it to happen right away. So, next weekend my son is having his first sleepover. Next weekend my son is having his FRIEND over again! I never thought this day would happen where I could say my son has a friend. Not only a friend, but a friend he made all on his own and a friend that looks past any differences and doesn’t question why he does certain things but just asks if he is ok and moves past it with Cam. A friend that wants to play with him.

In life I have learned so much thanks to my son. Since his diagnosis I have learned a lot about friendship and it hasn’t always been a good lesson. However, the friends that are true are the ones that can look past his diagnosis, past our struggles with him and see the amazing little boy that we do. I never thought there would be a day where Cam would have that kind of friend….but it looks like all on his own he once again has proven me wrong and has that kind of friend. As a friend of mine said “it only takes that one special friend to make a huge difference in our kids lives” and Cam seems to have made that one special friend. 

He has a friend...

“Can I come over to your house to play with Cam?” Those are words I honestly have hoped for so long to hear but truly never thought I would. Not because I don’t think my son is absolutely amazing because I do. But because my son doesn’t know how to be a good friend, though in his own ways he tries so hard to be. He knows how to play what he wants to play and if you don’t want to play that game or with those toys he doesn’t understand how to handle it. He usually shuts down or cries because he takes it personal. His play dates in the past have always been because I have been friends with the moms and have scheduled them. They have always been what felt like a forced play date. Not that these children didn’t play with him because they always have, but if I and the other moms were honest with ourselves it wasn’t because the other children actually asked to play with Cam. They were never  because a child has actually asked to play with him…never been because a child actually wants to play with him. And I understand it all. Cam does not make it easy…he doesn’t make it easy to be his friend. He doesn’t understand friendship…yet.

BUT and here’s where the tears start flowing…I heard those words. A little boy from Cam’s class came up to me at parent pick up and asked if he could have Cam come over to play or if he could please come to our house to play with Cam. I tried not to act surprised and play it off like this always happens. But, I was in complete shock and can’t even begin to describe how happy I was. You should have seen Cam’s face all lit up with a smile from ear to ear and begging that I let it happen that very second. Of course I couldn’t let it happen that very second but I agreed with Cam that I wanted it to. I wanted that smile, that glow to stay on my sons face forever. So, I told the little boy that I would talk to his mom and we would make it happen. We walked to the car and Cam was so excited and I was thankful to have sunglasses on because the tears were flowing. MY son….MY world…has a friend! The things that most parents take for granted….this is one of them. As a mom to a child with Autism this is a day that I never thought would happen.

I watched the next day at pick up as Cam scrambled to get his folder and things ready to go home in the classroom and this little boy…this friend of Cam’s stayed and helped him gather everything. More tears…thank goodness for sunglasses! They walked out together and said bye to each other and the little boy reminded me that he still really wanted to play with Cam. Seriously…I wasn’t dreaming! This is a reality for my son! That same day I received a message from this little boys mom telling me that her son was talking and begging to play with Cam. Really! I know I sound like I am so shocked that someone wants to play with Cam but I promise you I know how AMAZING my son. But as I have said I also know he doesn’t make it easy to be his friend. So, we have scheduled the play date for this weekend and both boys are so excited. They are already planning what they are going to do while he is at our house playing. I have to admit, I rearranged Cam’s room to make it more special for Cam and I have already planned in my head some snacks and to order pizza. I know how special this is for Cam, so I want to make it as great of a time as I can.

I am not sure who is more excited for Cam…him or me. But, I can tell you that this is a huge step for him. One that I am so proud of! We have waited what feels like forever for this day to come. My son is in second grade and he has a friend. Wow….that sentence brings so much pride to my heart. 

Work In Progress

Over the Summer I did a lot of soul searching. This past year has been a very rough one for me when it comes to certain friends and family members. By family my character and parenting has been attacked and by friends my attitude has been questioned. So I decided I didn’t want to be “that” person who said it was always everyone else’s fault….it can’t ALWAYS be someone else’s fault. I deal with family members who always put the blame on everyone else because it is easier than them looking in the mirror and seeing that they make mistakes…I do NOT want to be like them. So, I stepped back away from most of my friends, stayed to myself with my kiddos and did a lot of thinking. 3 months of Summer gives a person a lot of thinking time…even with two crazy kiddos running around. What did I come up with? I came up with that I have changed a lot since becoming a special needs mom and some of it is for the better and some of it….well though hard to admit to myself let alone anyone who reads this…but some of it was definitely not for the better. I learned that I needed to realize not everyone will understand my journey with Cam and that it has to be ok…I have to allow it to be ok. I need to remind myself that as long as they want to be on this journey then that is really all that matters. I learned that I have to remember even though I have to fight fights every day for my son, whether it be with schools, insurance companies, bullies, family, etc to handle him better, help him better, be there for him better…that not everyone do I have to fight the fight with. Now, I am sure to some of you that makes no sense at all but to me it was like a shining light went off. I had closed myself off to a lot of my friends because I forgot to shut off the fighter hat around them and put back on my friend hat. I am so used to fighting for what is right for Cam, for what he needs and deserves that I became this angry person inside and I wasn’t just hiding it inside any more….I was projecting it for the whole world to see and it wasn’t pretty.

How can I walk this journey alone? I can’t. I need friends in my life...I want friends in my life. But, why would they want to be in my life if all I do is push them away? Is it their fault my son is Autistic? Are they the ones bullying him? Are they the family members not treating him right? The answer to these questions and many others was no. Yet, I still pushed them away. I still found reasons why we shouldn’t be friends. I had become the bitter, angry person that I said I never wanted to be. When I finally stepped back and looked in my mirror my reflection wasn’t pretty and it definitely was not the one that I wanted to see. I once had a friend tell me that I put up walls and she was right. I do. But, as a special needs mom you feel like you are fighting so much for your child that you forget when to stop. I felt that no one understood my journey and if they didn’t understand then they couldn’t possibly be in my life. I was allowing Cam’s diagnosis and the fights that I was and always will be fighting to completely take over my life and put up walls all around me. These walls were so big that I was having a hard time seeing over them to the outside world.

I learned that yes, I am a special needs mom. But, I am also so much more. I am not perfect. But, I am a good person. I am learning to slowly tear the walls down. Not everyone who was around before is around now and though I am sorry for that I am learning to be ok with that. I am learning to stop fighting every fight and more importantly to stop fighting fights that don’t need to be fought. I am learning to be a better friend, better mom, better wife….a better person. I am learning that though life with Cam has a lot of bumps in the road that a lot of people will never be able to understand, that as long as they’re willing to ride the ride with me and be there for me I should count my blessings. I am a complete work in progress…however, I am starting to see the sun through the bricks in my walls so that must mean I am slowly making positive progress. 

Good Enough

“My son made the honor roll.” “Yeah, that’s great….my son made straight A’s.” “My daughter did her first back handspring today.” “Oh that’s nice…my daughter has done those for years.” Do either of these conversations sound familiar? Maybe not these exact ones, but similar. Times where you are being a proud parent and then another parent feels the need to make sure their child does something just one step better than yours. I feel like our society is in a constant “one upping” battle. I would say it is just us moms, but I have overheard dads being guilty of the same scenarios. “My son scored a touchdown today.” “Nice man….my son scored 5, one being the winning one for the game.” Instead of just saying, “that is awesome. You must be so proud.” Our first instinct is to say our child has done it and not only did they do it, but they’ve done it better. We are so worried that maybe they will think their child is better than ours or maybe they in fact are a better parent than us because their child is doing something better or faster than ours.

I went to a birthday party once that there was a face painter, train ride, bounce house AND petting zoo. Seriously, for a kids second birthday! What is the third birthday or shoot even wedding going to look like? I overheard the mom asking everyone what they thought and did they think it was the best party they had ever been to. So, was the party for the child or was it for the other moms? We are so worried about being “the best” that I think we forget to uplift each other and just be “good enough”. Keeping up with Joneses these days is getting harder and harder and let’s be honest more and more expensive. Not just money wise, but it is also costing friendships, causing self-esteem issues and if we’re even more completely honest we’re most likely not enjoying the work of keeping up with the Joneses. I mean is it not exhausting trying to have a better party, better clothes or what seems most important….having to make sure your kid is better than everyone else’s?

Instead why can’t we be happy being “good enough”? Why can’t we be happy with our children being “good enough”? Let’s be honest, our children see or hear us trying to compete and they will feed off of it. Either by trying to be better than each other and then if they’re not meeting or beating those high expectations, they will most likely have very low self-esteem or some will become bullies because they are so used to hearing their parents say how wonderfully perfect they are at everything that they will start to forget being “good enough” is better than thinking you’re perfect and better than others. As adults we will probably have better, more supportive and more genuine friendships if we stop trying to top each other and stop trying to have our children top each other. If we slow down and really appreciate what our children are good at, what others children are good at and what each of us are good at; I think our lives would feel more meaningful.

If your child does something BRAG about it and if a friend is bragging to you about their child…listen, congratulate and don’t try to think of what your child did to compare or compete. I personally am a complete bragging mama and I am sure it annoys some, but that is what I am and I am proud of it. But, I also love to hear about what my friends or their kiddos are doing and succeeding at. I have lost friendships because I can’t keep up with the Joneses or because my kiddos are “good enough” and not perfect. But in reality were they true friends? Lets stop trying to keep up with the Joneses and start motivating, cheering and loving each other more. 

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.