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.