Change CAN Be a Good Thing

What a difference a day can make. This morning Cam started at his old/new school. Nerves for both of us were in full force this morning. He barely ate his breakfast and I could see it in his little eyes that the nerves were on overload. His two favorite subjects right now are Science and Math. So to get his mind off things I started asking math questions. It was like an ease took over him and the nonstop thinking about the change went away for a little bit. The entire way to school we kept doing the math problems. I am not sure who it helped more, me or him. But we made it to the school with the nerves a little more at ease than they were when we woke up. We walked in and met with the registrar and she is the one who took him off to class. Let the tears and nerves go into overload. Not for him, for me. He and I are both used to me walking him to class every day, but that is not the way at this school. I thought for sure this would start a complete meltdown because of nerves and because of another change for him. I am beyond proud to say that there was no meltdown, in fact he walked off with her and barely looked back. He did stop and say, “I love you mommy see you at pick up.” Oh, my boy’s sweet words melted my heart and I was so proud of how well he was holding it all together.

After drop off I was a complete nervous wreck. My stomach was in knots. I was a little at ease because he did do so well at the drop off, but all of the what if’s started to play in my mind. What if we made the wrong decision? What if he has a meltdown today and the kids laugh at him? What if he doesn’t like the smell somewhere and completely freaks out? What if? What if? What if? Oh, so many what ifs. Luckily a good friend of mine just had an adorable little baby that I was able to go and snuggle with for awhile and it took my mind away from the what ifs. As I sat there holding this precious little boy I remembered all of the promises I made Cam the day he was born and the biggest one was, no matter what I am always here for you and I will always protect you. So, even if one or two or all of those what ifs happened, I was there for him and I would somehow, someway make it all better. That’s what all moms tell their children, I think with special needs children we’re just put to the test a little more each day of proving it to our children because we are constantly fighting for them.

Pick up time came and I sat in the car on pins and needles. Pick up is different there; I can’t just go up to the classroom door any more. I have to wait in my car and the classes come out to the pick up area and the teacher or administrator put the child in the car. So I sat waiting and waiting, I tell you it felt like HOURS. It wasn’t, but it felt like it. And then I saw him, walking in line properly with his class and he had a smile on his face. Can you guess what I did? Yep, I started to cry. I swear one day I will learn to hold these darn tears back. He hopped in the car and started basically screaming with excitement all about his day. His teacher is amazing and she’s pretty. And yes my son told her she’s pretty….sucking up on the first day, making his mama proud. He told me he had music and it was ok but not his favorite special area. Which is usual for him, he doesn’t like all of the loud noises. Then came up “mommy, X is in my class and he remembers me from Kindergarten and Y and Z are two girls that were in my Kindergarten class and they remember me too and they ate lunch with me! They ASKED me to sit with them mommy! And mommy I did what you taught me and I asked X what he likes and I tried to listen” Um, yeah tears are flowing. Thank you lord for sunglasses. And just when I didn’t think it could get any better he says “AND mommy at recess X played with me! He really played with me and I played soccer with him and some other boys that I have no idea what their names are.” That made me laugh and so very proud. He played with other kids! They ASKED him to play with them! I asked him if he was happy about the change still and his answer sealed the deal “mommy, you and daddy were right change CAN be a good thing and I LOVE my school and I want to stay here forever, well forever for elementary school which is 5^th grade…yeah mommy I want to stay here until I graduate 5^th grade. Mommy this school is awesome!” He barely took a breath telling me about his entire day and he couldn’t stop talking about it. It has been so long since I have seen him this happy about school and see a smile so big on his face.

I know not every day will be this great, but for today I am enjoying every second of it. Cam has made such huge strides and today was just another example that anything is possible! I never would have imagined my son would have handled change so well if you had asked me a year or two ago. As a parent of a child on the spectrum you get so used to fighting and hearing all the negative and seeing your child struggle and depressed because of the bullying and struggles that you forget there are those amazingly positive, happy days. Today proved to my husband and I that we made the right decision. Cam went to bed thanking God in his prayers tonight for his new school and for kids actually wanting to sit with him at lunch and play with him at recess. His prayers broke my heart and made me happy all in one breath. No, not every day will be rainbows and sunshine but today is and today we celebrate that change CAN be a good thing. 

Change is in the Air

Change is in the air for Cam. Tomorrow he will start at a new school. Well, technically and old/new school. Confused yet? Let me give you a little back-story. When Cam was in kindergarten he started out at one school. This school is a small, older school but it is a really great school. But, in our area this school is looked badly upon because of the area that surrounds it. It’s not the greatest area but the school itself is wonderful. Well, as much as I like to speak my mind and pretend that I don’t care what others think…I really do. I am working hard on this flaw of mine. Why should I care? But I do and you’re not reading this to learn about that flaw of mine. So, anyway Cam started at this school and because of what others perceptions of this school were my husband and I honestly never gave it a chance. We pretty much found anything wrong with it that we could. Were these real problems? Not at all. Was the teacher excellent? Yes she was and Cam loved her. Did he have a few little friends? Yes, he was starting to. Then in the middle of the school year we transferred him. And now you are probably thinking…why? If everything for the most part was so great, why in the world did you move him? Well to be honest and I am honest to a fault, we did it for two reasons. One being we thought the school that we were transferring him to was a better school for him and the second reason was because we cared too much what others thought and wanted him at a school that others didn’t shun. So, half way through Kindergarten he started at “the” school. Cam wasn’t excited about the change at first but we didn’t give him another option. So, that’s the back-story.

Cam has been at “the” school ever since and once again to be completely honest I have had concerns and issues with “the” school since day one. Now don’t get me wrong, “the” school is a good school. If your child is neurotypical it is one that I would recommend. But, Cam isn’t neurotypical. Cam has struggles, he has mild behavioral issues, and….well, he has Asperger’s. So, because of a lot of my concerns and issues with “the” school, last Summer I was ready to transfer him. "THAT" school is able to offer him more of what he needs. I had talked to him and he was somewhat ok with it. He isn’t a fan of change, so his dislike of change was making him somewhat ok and not 100% ready for change. I had talked myself into it because “hey I don’t care what people think” and “change is good”. Well folks, I completely lied to myself on both accounts. When I would tell someone I was transferring him back I would get the comments of “oh, you’re really going to take him to THAT school” or “I can’t believe you’re really transferring him to THAT school”. Put that with my absolute fear of change for my son, the unknown is scary and I feared that I would be failing him with the unknown. I fear change when it comes to my children just as much as Cam fears change. So, put my fear and caring what others think and well Cam started this school year at “the” school. This school year for the most part has been a horrible rollercoaster. With more downs than ups and for the most part they weren’t Cam’s fault. “The” school just really didn’t know how to handle Cam and this year more than the year and a half prior it came shining through. Then add the fact that my son is now coming home depressed because he has no friends and because he knows some of the other students are laughing at him and well it has been a year from hell.

Yesterday was the icing on the cake of issues and my husband and I decided after LOTS of thought that it was time to make the change. So, we talked to Cam about transferring him to “THAT” school and he was excited. Now my son doesn’t get excited when it comes to change for anything, so for him to be excited told us that he has been really miserable. He told us “I don’t like change but I think I will like this change”. Of course I didn’t sleep at all last night because I was sick to my stomach with worry. Am I making the right decision? Am I failing him? Is “THAT” school the right one? And then the caring what others thought came in my head about transferring him to “THAT” school. But, then it was like a little light bulb went off in the middle of the night and I finally realized when it comes to school and what is best for my son it doesn’t matter what anyone else thinks. They are not the ones who deal with his struggles, his depression and low self-esteem. They are not the ones who deal with his meltdowns at home because he has tried his hardest to keep it together at school all day so the children don’t laugh at him more than they already do. It is time to transfer back to “THAT” school. If I don’t do it now I will never do it. So, this morning Cam and I went together and registered him at “THAT” school and my son is very excited about the change. He didn’t stop talking about it all day. He was honest and said he’s very nervous but he’s also very excited.

I still got the “Oh you’re transferring him to “THAT” school” comments today when I told some friends, but for the first time I just didn’t care. “THAT” school is what is best for my son right now, he is excited about going to “THAT” school and I know in my heart we are making the right decision. Change is so scary and I know I won’t sleep tonight and all day tomorrow will be a nervous wreck until I pick him up. But, this is what he needs….this is what he deserves. So, tomorrow morning he starts back at his old/new school and for once in his life my son is excited about change. 

Big Week....For Both Kiddos

This week was a big week in our house. I don’t usually talk about Cam’s sister much because well….this blog is about Cam and our journey with him. But she is a huge part of his journey and this week was a big week for both of my children, so I decided to share. When you have a child on the spectrum and a neurotypical child, you get so used to fighting for your spectrum child, taking them to their different doctor and therapy appointments (because goodness knows Autism isn’t enough to have, most of our children have several different medical issues too) and worrying about your spectrum child’s issues, that as a parent you take for granted that your neurotypical child is just fine. Cam’s sister is an amazing sister to him, she is loving, very protective over him and is extremely patient with him. They are the best of friends. To say my husband and I are lucky with her is an understatement.

On Thursday I had to take her to a specialist and Cam knew something was different because she didn’t have to get up and ready in the morning like she always does to take him to school. She stayed home with daddy while I drove him to school. He started asking me questions on the way to school and to be honest I was able to talk like it was nothing because at that point I thought it was nothing. Dropped him off at school and a little while later she and I headed off to the doctor. I wasn’t nervous like I am pretty much every time I take Cam to the doctor because for the most part she has always been very healthy. While in the waiting room she made friends with a little boy, but this little boy wasn’t able to use words with her, only sign language. It amazed me that my sweet little girl and this sweet little boy were able to communicate so well because she doesn’t know any sign language. At one point the mother of this boy said to me “my son just signed to me that your daughter is an angel. He isn’t used to other children playing with him.” Broke my heart and made me proud all at the same time. This little boy was sweet, just like Cam, yet most can’t see past his disability. Oh how I wanted to hug the little boy and his mom and say how much I could relate but I didn’t. I sat back and watched the children play and see the little boys mom sit back and smiling. When we got called back the children hugged and it was such a sweet moment. The mom thanked my daughter for being her son’s angel today and my daughter said “he’s one of my best friends now, I hope we can play again soon.” I am so proud that my daughter doesn’t judge on differences, she loves and accepts all children. I am thankful because I feel Cam has helped teach her this.

Once the doctor came in, my reality check for my sweet girl smacked me right in the face. “We will have to operate, remove this and send it off for a biopsy.” Excuse me….what did you just say? I came in thinking that this little bump inside my daughters lip was absolutely nothing and that you were going to laugh at me for being here. This is my happy and healthy neurotypical child that nothing is wrong with. I questioned the doctor over and over again because I couldn’t process it all. Thankfully this doctor was very patient with me and answered all of my questions and then answered some of hers. Listening to your 5 year old ask questions about a surgery….now that is something you shouldn’t have to hear. The doctor of course went over best and worst case scenarios and the only ones we are focusing on is the best case. But now we have to wait for surgery….which isn’t until April 1. For many different reasons we have to wait and any parent knows the waiting on anything to do with your children’s health is the hardest part.

After her tears of fear were done (for now) and I hid my tears and fear from her we headed back to town to pick up Cam from school. She couldn’t wait to talk to her big brother about what the doctor said. Though Cam has a hard time showing compassion to many, he loves his sister and is always worried about her. I listened for awhile because I wanted to hear how my daughter interpreted what the doctor said. At 5 she didn’t understand much thankfully but she understood enough to get her brother worried about her. He asked a few questions and we decided that we aren’t going to worry about any of it right now because the surgery isn’t for a little while. And like that they started playing in the car and life was back to normal. It amazes me that my son is so close to her when I see him struggle so much with making friends and dealing with anyone else for that matter. The bond that these two have is truly amazing.

So with all of this going through my mind, I had a meeting scheduled the very next day with Cam’s teacher and a behavior specialist. Life goes on and off to the meeting I went. Cam’s teacher had voiced a TON of concerns at our last parent/teacher conference so I was pretty much ready to come in guns blazing so to speak to this meeting. Well, to my pleasant surprise she had nothing but great things to say about him. She bragged on how well he was doing with his writing, listening, you name it and all she could do was brag. I honestly felt like I was in the twilight zone. Yes, I believe my son is amazing and yes I know what he is capable of. But hearing those words from the same teacher who had voiced so many concerns just a couple of weeks ago was music to my ears. This school year has for sure been a tough one for Cam, for many different reasons. But, for now my boy is making incredible progress and I am so very proud of him.

This has been a happy/sad week in our house. We’re focusing on only positive and not allowing ourselves to think any other way. I will say though, all of this has reminded me that I can’t take a second for granted with either one of children. 

They Laugh At Me....

“They laugh at me when I cry. I can’t help it mommy and it hurts my feelings when they laugh at me.” Words I got to hear from Cam’s mouth last night at dinner. He and I had a mommy and Cam weekend away this weekend and we had so much fun. Yesterday we saw the new Lego movie, went to the Lego store because according to my son that is what has to happen after you watch a Lego movie, we played and laughed and the day was just perfect. We headed off to dinner at his favorite dinosaur restaurant and I made him keep his ipad in the car. I told him that we need to talk when we’re at dinner and not be consumed by electronics. This is a new rule I am implementing in our house too….electronics are great but they are taking over my house. He was great about it, no meltdowns at all. So at dinner I started to ask him little questions, what is his favorite dinosaur now, what is his favorite animal. It’s funny that I live with this little human being but feel like I don’t know him because he closes down so much when it comes to talking. Yes, I know my son, but I would love to be inside his little brain to REALLY know him and these questions were my way of trying to get in there. Then came the school questions and I found out more than I was prepared to at dinner. I was just asking him about his favorite subject and then asked about his friends. This is when a harsh reality hit me….”mommy I have no friends. No one ever wants to play with me. X tells me not to sit next to him at lunch any more because I am weird. They all laugh at me when I cry. I can’t help it mommy and it hurts my feelings when they laugh at me. They make a lot of fun of me when I cry for you too.” My heart completely sank and anger set in all at the same time. My son is opening up to me so I can’t say what I would like to say about these children…these bullies. Plus I am supposed to be the adult here so I can’t say the things that are going through my head. We talked more about things happening at school and though I wish I could say the conversation got better, it didn’t. But, what I was proud of during this heart wrenching conversation is that he finally opened up to me. I finally was able to see into his little world….even if it broke my heart into a million pieces.

Cam knows he has Asperger’s, he knows he will always be different and last night he let me know how much he hates his differences. He told me he wanted to be like everyone else so he wouldn’t cry, so the kids wouldn’t laugh at him and so he would have friends. Those who believe children on the Autism spectrum don’t care about others, you are very wrong. Cam is complete proof of that. Though he doesn’t know how to be a good friend, he so badly wants friends. Though he likes to be alone a lot of the time, he wants to have a friend who will play with him when he doesn’t want to be alone. He wants what we all want and that is to be accepted for who we are.

Though the conversation did not go the way I wanted it to, I was able to for the first time have a real conversation with my son. It wasn’t all bad and when I couldn’t take any more of hearing the bad, I changed the subject and we laughed the rest of the night. I didn’t want our entire night to be sad. I didn’t want his differences to once again ruin a day for him. When we got back to the hotel he told me how much fun he had with me and how much he loved me. Then he said words that I will never forget, “thank you mommy for loving me, even when I cry and scream.” My son sees his differences shining through and he is realizing he has no control over these differences sometimes. I tucked him in, kissed him goodnight and then went and cried the rest of the night. Now I realize if you’ve been reading any of my blogs you already know I am a crier, but last night was a sobbing, ugly cry. I knew there would come a day that he might get bullied, I just wasn’t ready for it to be now and I wasn’t ready for him to tell me.

I wish parents would teach their children that it is ok for everyone to be different and how mean it is to laugh at others because of their differences. I truly believe bullying starts at home. I wish they could look and see the damage that their children are doing to these sweet, caring children…what they are doing to MY SON! All of these children really just want to be accepted for who they are…not made fun of for who they aren’t. My son is SO much more than his differences and I wish with all of my heart that people would see that. My son knows his differences, they shine brightly and he doesn’t need others laughing at him, saying mean things to him and pointing them out to him. Hearing his words shattered my heart, so I can only imagine what his heart feels like every day when it is happening to him. I wish I had a magic wand to make his world easier and to make the bullying stop……

Remembering.....

Today I was brought back to remembering the day of Cam’s diagnosis. It is hard to believe that it was a little over 3 years ago now because as I sat thinking about it today it was like it was just yesterday that it all happened. I remember sitting in the waiting room for the psychologist with complete knots in my stomach. He walked up and introduced himself to us and to Cam and I sat there watching my son who could care less about this man, this stranger standing there in front of us. Cam was more concerned about his dinosaur puzzles. We walked into the room and the psychologist for the first few minutes just observed Cam, then did some testing with him and then turned to my husband and me and asked lots of questions. It was honestly the longest visit of my life yet the shortest. At the end of it all he looked at us and said, “your son has Asperger’s and ADHD”. I started crying, bawling, I couldn’t catch my breath. The doctor looked at me and said “I can tell by your tears you already knew what I was going to say”. And he was right, I did. I had fought against others who told me I was crazy that there was nothing wrong with my son, I had tried everything I could imagine to get him help prior to bringing him there. But, I did know that when we walked into the office that day I was going to hear those words. That fact didn’t make hearing those words any easier, to be honest I believe it made it harder. Had I known yet been in denial all this time? Had I done all I could to help him or should I have done more? The what ifs, the could ofs and should ofs…they started creeping in and the tears flowed harder all the way home. The life that I had envisioned for my son was no longer there. Of course I had already seen some of this life I had so wanted for him start to disappear before the diagnosis. We tried team sports for him like t-ball and soccer and those were both an epic fail. We had already lost some friends because who wants to have play dates with a child who melts down at the drop of a hat? Who wants to go out in public with a family who has a child that appears out of control or that says what seems to say rude things? So, even before the diagnosis our lives had changed but there was still that ounce of hope. Maybe the doctor will tell us this is all normal. Maybe he will tell us the others were right he will outgrow this…maybe we will be invited to those play dates once he outgrows it. Then BAM! the diagnosis comes and I realized that those maybes will never come true.

My son is Autistic…that sentence still brings tears to my eyes. I have over the past 3 years had to mourn the life that I had envisioned for Cam and come to terms with the life that he will have. Is that life less or worse than what I had hoped for? No, it isn’t but that doesn’t mean it still doesn’t hurt my heart to know he won’t have the chance to have the life I so wanted for him. I think that is the big thing I have come to terms with….well who am I kidding, I am starting to come to terms with or maybe I will never fully come to terms with, the fact that it is ok for me to mourn the life I wanted for him. Would I ever change my son? Absolutely not. He is my son and he is perfect to me. But that doesn’t mean I wouldn’t change the struggles he goes through and that he will always go through. Would I ever take away his Autism? Some days I say no and some days I say yes. The days I say yes are the days I watch him struggle to a point that I can’t help him at all or at least to the point where I feel like I can’t help him. But, his Autism is who he is and saying that I want to take it away is like saying I want to take him away. I do however want to take his struggles away. I want him to be able to have real friendships one day and maybe (30-40 years from now…haha) a girlfriend. I want him to be able to communicate easier and not be stared at for his differences. His life will always be harder than others, but that will make him a stronger person…right? It has taught me as his mom to be a stronger person so I have to believe it will teach him the same. Over the past 3 years he has come so far. That part I celebrate, the big and the small accomplishments I celebrate. It may not be the life I envisioned for Cam, but he will still lead an amazing life. The mourning process still hits me when certain things happen, when I see friends of ours children doing certain sports or activities or I see events that before Cam’s diagnosis or issues started shining brightly I was invited to. I think as Autism parents we should be allowed to have this mourning time and it doesn’t matter if we never stop mourning certain aspects of our children’s lives that we had envisioned for them as long as we don’t forget to live and enjoy the amazing child we have in front of us. Cam will lead an incredible life….Autism and all. 

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.