Family....

   Family is a funny thing to me. They are the ones that are supposed to love and support you unconditionally. They are the ones that you are supposed to feel you can be in a judgment free zone around. I was having a discussion with a friend of mine last night about this. Actually I was talking about how sad I am that this in fact is not the case. She said something that completely hit home…she said blood only makes you relatives…it doesn’t make you family. Such true words....

   The sad thing is, we have many relatives in our life. The ones that we have tried and tried to help understand our life but they just choose not to. Our life isn’t easy and sometimes (ok a lot of times) very hard to understand but it can be done. But the fact that I am trying to beat into my own head is that you can’t change people, no matter how hard you try. People will continue to live their lives even if what they do hurts you because usually they do not see anything that they are doing is wrong. They worry more about what everyone else thinks than what the ones they are hurting think. I am learning that if they really wanted to understand our world….they would.

  Here’s my conclusion to the added struggles these relatives have put on our lives.... we’re done. Our life has enough struggles that we don’t need to continue to try over and over again to force you into something you obviously don’t want to do…which is be a part of our life…our Autism life. Cam has taught me to fight for things in life that I never thought I would have to fight for. But he has also taught me, especially recently that it is ok to not have everyone’s acceptance and have everyone in your life. Most days he could care less what anyone else thinks and he does what he wants and he’s happy in his life. A big lesson I am learning from my 6 year old.

  Something else I am learning lately is that we are beginning to have our own family from people who love us and accept this crazy Autism life we live. Though days are rough and sometimes it feels completely lonely…they are showing us that we are not alone. When they don’t understand why Cam does something they ask questions so they can understand. When they see we’re having a bad day they reach out to us and ask if there’s anything they can do to help. They listen, not just hear us but truly set their lives aside while we’re talking and they listen to us. This is our family and I am learning that even though others have turned their backs on us or have hurt us these people won’t and it’s ok to open up to them…it’s ok to let them into our Autism world. Some have kiddos on the spectrum and some don’t, a couple are blood related but most aren’t… but what all are showing us…is what unconditional love, real support and acceptance in this crazy Autism life is. Life with Cam isn’t always easy and being a part of our life with Cam and all that comes with this crazy life isn’t always easy but I will promise you it is worth it! And lately on our journey we are starting to feel not so alone….thanks to our family. 

Struggling....

       Today was a rollercoaster of emotions for me. We started the day off great. Cam woke up and was excited because today was field trip day and he got to ride a school bus for the very first time. He was so excited! So the two of us head off to school and there was no drop off today because since I was a chaperone I just stayed with him. So when class started I was able to sit back and watch him and see how he interacts with all of the other kiddos in the class. This begins the rollercoaster of my emotions for today. I watched as the other kiddos got books and sat in groups to read together and then there was Cam. He sat alone and then at one point went and sat next to his teacher to read to her. Now this didn’t upset him, but it did upset me. I later asked his teacher if this was what happens every day and of course her answer was yes.

       So a little while later we headed to the bus and as soon as everyone was on I could see it in his eyes that he was a little unsure and overwhelmed. I asked him if he was ok and he didn’t say anything, he just grabbed my arm and didn’t let go for the rest of the ride. As we got to the first stop on our field trip I tried to be like other parents and sit back and watch and listen. But, with Cam that isn’t what happened for long. He likes to be the boss and he likes to be the one who knows everything. Which in turn gets on the other kiddos nerves and I can see the annoyed faces glaring at him. I was able to sit with him and try to keep him from doing the blurting out. He doesn’t get the social cues, so the glares and annoyed comments from the others he doesn’t get. I am so sad watching this and I wish there was something I could do to help him understand what’s going on.

       Then we headed off to the next part of the field trip, which was a lighthouse. I have complete anxiety when it comes to heights, so I knew unless someone wanted to call 911 from me passing out that I wasn’t climbing up those stairs. I told Cam that I couldn’t but that his teacher would be with him and off he went. I was completely shocked and so very proud. He climbed the entire way up, 203 stairs might I add! He was so proud of himself when he came down, the smile he had melted my heart. “Mommy, I DID IT! I climbed ALL that way!!” Yes, tears are coming now just thinking of seeing his little face lighting up.

       Lunchtime came and it was a complete fail. All of the kiddos are pairing up and eating together and there’s Cam….alone. I asked him if he wanted to go eat with his friends and his response was “I have no friends mommy. You’re my best friend will you eat with me?” Hold back tears….hold back tears…that’s all I kept telling myself. The reality is, he doesn’t have friends and lately it keeps hitting me harder and harder. I watch my friend’s kiddos having sleepovers and play dates (successful playdates) and I SO want that for Cam. I hear family members complain about their neurotypical children being hyper or fighting with their sibling and I want to ask them to trade places for just one day and you would learn to truly appreciate what you have. Today I wish Cam’s life was easier and that he could enjoy the things that so many others take for granted with their children.

   We head over to the final part of our field trip, which was the Marine Science Center, and of course Cam was very excited…it’s animals. He knew the answer to every question, which made me so proud. But in the same breath I saw the other kiddos eyes rolling, them telling the teacher that he’s annoying and calling out and again I fight back tears. I am so proud of him for knowing all that he does. Truly my kiddo is like an encyclopedia of knowledge when it comes to animals and dinosaurs. I can see where the others would get annoyed but I also wish they would see that it is very neat that their fellow classmate knows so much about animals.

  Our afternoon was a rollercoaster. Happy one minute and then complete and total meltdown the next. The last meltdown today lasted about 45 minutes and then it was off to get ready for bed. Here’s where my emotional day goes into overdrive. We do prayers every night before bed and tonight was no different. Cam starts and he says “thank you God for my family and thank you God for making me special with Asperger’s and giving me a mommy and daddy that love me with my Asperger’s”. Bryan and I were blown away. Where did this come from? Oh that’s right….it’s our incredible son…you have to expect the unexpected with him. After everyone was done with prayers I told him how very proud I was of him for his prayers tonight and he said “I know, I have Asperger’s and I have to thank God for giving it to me”. Seriously kiddo you completely amaze me every day. Today ended with him being ok in his own skin and me still struggling with it. But, the most important thing is that he went to bed tonight being ok with who he is and that is beyond amazing to me. 

It Takes a Village...

It takes a village to raise a child. That is something I have heard since the day Cam was born. At first I thought it was crazy. I remember when he was first born, I didn’t think anyone else could take care of him the way I did. I didn’t want to leave his side in fear that I would miss something or that he would need me. The mama bear in me completely kicked in and I was probably a little too obsessed with being his mommy. But, I was a first time mom who didn’t want to make any mistakes. Though, I kick myself now because I should have asked for help, I definitely could have been a better mom with more sleep.

But, now Cam is 6 ½ and has Asperger’s and ADHD and that village has gotten much smaller. It amazes me when I see my friends who have such amazing support systems…they have that village. I even see family members who have neurotypical children and they have that village. I am honestly envious of all of these people. They have date nights regularly, they have “me” time, they have things that this house never sees. What makes me even more sad is that I have found out it is very common for families with children on the spectrum to not have that village or at least not a village as big as those with children that are “normal”. But it is those families that don’t have it, that need it the most. Why is that? Why are the villages smaller for the ones that need it the most? I have been thinking about this a lot lately due to conversations with friends and due to our village seeming to get smaller and smaller by the day.

I do believe it is hard for any parent to be a parent these days. Trust me I am not saying just because your child is neurotypical that it isn’t hard and that you don’t need your village. However, a parent of a special needs child doesn’t just have the every day issues that come with children, we have more. We have doctor’s appointments all over the state because the “best” doctor’s are never in your own town. We have countless therapy sessions scheduled for our children, you think sports takes up a lot of time….please try taking your child to several different therapies a week, sometimes even in a day. We have to keep up with all of the school issues because not only do we have homework and school functions to keep up with but we also have those wonderful evaluations that are constantly happening, the parent-teacher meetings that happen very often and those wonderful lets fight with everything we have IEP meetings or if you’re in my current shoes fight every day with everything you have just to get your child an IEP and the help that they really need. Then there’s the meltdowns, the ones that parents with “normal” children have no idea what we go through. You can count to three; take something away or even time out will work. That doesn’t work for most of us special needs parents. Counting just kicks our child’s anxiety into gear, which then causes a more severe meltdown. Then a lot of us have other children, some have other children that are also on the spectrum so double, triple the above list. (those parents are truly my heroes) For those of us that have other children that aren’t on the spectrum we have the constant guilt that we are not doing enough for them because of the above list that we have to do for our child on the spectrum. We want them to be involved in everything that they want but we have to schedule it around therapies, doctors appointments and teachers meetings. How is that fair? It really isn’t, but when you don’t have a village to help you, you really have no other choice.

See all these times are when we could really use our village. I agree it takes a village to raise a child. I now completely understand why that saying is so popular and true. I also understand that unless you live with our special needs children you will never truly understand them, I have come to learn and accept that. But, is trying to understand them so hard? Is trying to help be our village in any way possible really that hard? Do special needs parents seem a little bit more uptight and feel like we have to explain every detail about how to help our children to you? Absolutely! We live it, every second of every day. So we know what’s going to cause a melt down and what may help if a melt down happens. We know what they will eat or won’t. We know how they like to be touched or when they may need some time alone. We know “the” looks or sounds they may make right before overstimulation kicks in. It doesn’t mean we don’t want your help or we don’t think you know what you’re doing. It just means we want to help you while you help us.

I don’t understand completely why our villages are so much smaller. I don’t understand why when other people complain about how busy they are, why special needs parents are overlooked or ignored. What I do understand is that we need that village more than anything. I understand that we appreciate the help, the shoulder to cry on, the ear that really listens, the offer to try and understand our journey. I know that we want that village but most of us have given up trying to build it because we fight so much for our child every day that when it comes to fighting for a village to help us we have no strength. It takes a village to raise a child and all of us deserve, desire and need that village….all of us. 

What Happened?!

I am not sure what happened at school today, if anything but Cam came home in the worst mood. I picked him up, we get in the car, Peyton says hi and he snaps at her not to talk to him. He then asks me if we are going to his friends house today for a play date and when I tell him no, he then proceeds to have a complete meltdown right there. I don’t ever tell him about play dates because of times like today where they don’t happen; he doesn’t know how to handle it. Yes, all kiddos get excited about play dates however, Cam counts the minutes, seconds, until the time he knows he’s suppose to have these play dates, so to try and avoid a melt down I just don’t tell him until right before we leave or they come over. But this time he overheard me and the other mom talking the other day, so he has had it in his head ever since then. So, while driving home he was having a complete meltdown, punching the chair, hitting his head on the window, screaming, kicking and then Peyton is crying because he is scaring her. I am very thankful at this point that our drive home is short. I get Peyton into the house and she heads to her room to play and then back to get the screaming child out of my car. He is kicking me and screaming bloody murder the entire way to his room. I am pretty sure I have damage to my left ear from the high octave of his screaming in my ear. About 30 minutes later he is calmed down, comes out of his room a complete sweaty mess and is done.

So we move on and hope for the best. Well the "best" lasted all of maybe 15 minutes and then there was another melt down. Why you ask? Well because I asked him to go potty before he sat down to watch Wild Kratts. “I DON’T HAVE TO GO POTTY MOMMY!!” Well kiddo since you have accidents a lot mommy is just trying to hinder it from happening. He goes across the house screaming at me at which point daddy is now home from work and not liking the way he is screaming at me. So daddy tells him not to speak to me like that. Insert the complete and total meltdown here. “MOMMY TOLD ME TO GO POTTY AND I DON’T HAVE TOO! I DID NOTHING WRONG DADDY!!!” Then off to his room he goes and SLAM goes the door. I swear I am going to rip that door off of its hinges one of these days. The meltdown is going on when I start hearing loud bangs so I go running in to find him now head banging his head on his wall while kicking his top bunk and then he starts screaming “I AM GOING TO BREAK MY WINDOW WITH MY HEAD!” Now I have NO idea where this came from nor do I understand it, but now I am scared because he’s already hurting himself with the wall and his bed, so I have no doubt he will in fact put his head through his window. Sitting on top of him using my sumo wrestler moves for I don’t know how long, it seemed like an eternity though and he starts to calm down. He started to cry the little boy cry he does when he’s completely done with his meltdown and we sat on his bed…him crying and me holding it together as best I could. “I just really didn’t have to go potty mommy.” That is all that was said and we moved forward. Why rehash the hell that we just went through?

Melt downs are over for the night, right? Yeah, not so much. He had another one over Peyton not being quiet during his Wild Kratts show and I told him that just because he was having a bad day he couldn’t take it out on her. “I AM NOT HAVING A BAD DAY! SHE IS BEING LOUD AND I CAN’T HEAR MY SHOW!!!” Yeah, kiddo why don’t you take your iPad and watch your show in your room? So, a meltdown later and he is off to his room with his iPad to watch Wild Kratts by himself.

Tonight is movie night, so I told Peyton she could pick the movie out. She goes to tell Cam it’s movie time and he screams at her to get out of his room. She really is amazing because she comes in and just says, “He told me to get out not very nicely mama. So I don’t think he wants to watch our movie.” We start to watch it and he comes in and decides he wants to watch it with us. Why fight it and tell him no? It IS movie night and this night HAS to get better. So, we lay and watch the movie…well Peyton and I lay and watch the movie, Cam is all over the place. Sitting and just watching a movie just doesn’t happen for him most of the time. So, we try to enjoy it while he bounces all over the place repeating EVERY word in the movie. This is our typical movie night. But, I wouldn’t change it for the world because it is something that both kiddos look so forward to every week.

So, he ended the night in a good mood and bouncing off the walls. I am not sure exactly what time he will actually fall asleep. But for now he is in his room and has only come out ten times so far to tell daddy he has to go potty…his way of avoiding going to sleep. Or he’ll come out and tell daddy he needs one more stuffed animal or he will all of a sudden remember something that he needs to tell us about one of his favorite animals. Either way this kiddo will be up for awhile. I am hoping tomorrow is much better…my ears and bruises on my arms and stomach are also hoping tomorrow is much better. 

Decisions...

I have been sick to my stomach this week over making decisions for Cam. Just when I think I have everything figured out for his school year next, I start to second-guess myself. What if I make the wrong choice? Then not only do I worry about his school year but now Peyton will be starting Pre-Kindergarten and some of where she goes weighs on where Cam goes to school next year. So, now I feel torn because I want to make the right choice for both of them. She deserves a great school too and it shouldn’t be based solely on where Cam goes, but a lot of it has to because of drive time and being there right on time to be in parent pick up right as soon as school lets out for Cam to see me the second he comes out of class. If he doesn’t see me right away anxiety kicks in and melt downs occur. Insert no sleep at all this week and feeling sick.

I feel like Cam is starting to make some progress at his current school with his fellow students understanding him a little. The teachers he has this year are wonderful, incredible, I really just feel so fortunate that he got these two teachers. They see the positives in his differences and help him excel in those. But, this school year is coming to an end and I worry about next year. Is the next set of teachers going to be able to do the same? Is the school going to be able to offer him the resources, accommodations, etc that he needs? We are STILL working on getting him an IEP and at this point I am starting to feel as though he will never get one! So, I don’t know if what all they feel he needs and what all I feel he needs as far as accommodations and services if they are going to be able to do it for him. So, until this stupid meeting happens I still wait for those answers. I don’t mean to sound so negative about the IEP process as I know many others have much worse things going on in their lives. But this process has been the entire school year and we still do not have one.

So, then I worry what if I change him to a different school. Is that “the” answer? Will he do better there? Will they understand him better? So many questions just keep going over and over and over in my head. If I do change him will he be ok with the change or will he start to spiral downward? Spiraling downward seems to happen with change for him and when the spiraling goes out of control it takes a long time to make life ok for him again. Do we take that chance?

I had been told by a friend who also has a boy with Asperger’s that first grade was a hell of a year for her son when he was in first grade. A lot of changes going on for him and that I needed to prepare myself. I guess I should have listened to her. She was right; this has been a hell of a year. But, now we’re coming to the end and it feels like things are finally starting to come together for him…so do we change next year?

I know none of this really makes sense because I can’t seem to get all of my confusing feelings into words. I just want to make the right decision and I want a magical crystal ball to tell me what that decision is. I feel like I failed him for so long before his diagnosis by listening to other people tell me I was wrong and not pushing harder for testing. I feel like l failed him after his diagnosis for a while because even though I felt like something was different about him, the diagnosis itself brought me to my knees. I feel like I fail him every day by not being patient enough with him or by apologizing for him being him. I feel like I fail him because maybe I am not fighting enough for this IEP. I feel like I am failing him because why can’t I get family members to take the time to truly understand him? So, when it comes to making the right choice for school next year I don’t want to fail him….again. 

And He's Off!

This weekend was a rough one with Cam. He’s been having meltdown after meltdown and it’s just been a rollercoaster for all of us in the house. So, when he woke up in a bad mood today and had a meltdown before we left for school I thought the start to our week was going to be the same as our weekend. Drop off went pretty good at school and he actually gave me a big hug good bye. So, off I ran before something completely changed.

A very good friend and I met up for lunch today and it was really what I needed. She and I hadn’t seen each other in awhile and she is one of the few friends who get my life with Cam. (The friends who get it or do their best to get it…there are no words for how grateful I am for those few) She also has a kiddo with Asperger’s, so she and I can really relate on that level and on many others. So, it was really nice. Peyton was happy because it was at her favorite restaurant Chick-Fil-A, so it was a win/win for both of us. Then pick up time came and Cam was in a weird mood. Not really a bad mood but it wasn’t a happy go lucky mood.

The weather was beautiful out so I asked the kiddos if they wanted to play out front with their bikes and scooters. Both of them jumped at that opportunity so I was happy about that. Then out of nowhere Peyton asks me to take her training wheels off of her bike. Now she’s only four so I was a little surprised but she was positive that she wanted them off, so off the training wheels came. Now, the bigger surprise for me was while I was taking them off Cam says, “Mommy, I’m ready for you to take mine off too.” You should have seen my face. I was shocked. I was shocked because we have tried several other times and it just wasn’t the right time. He would get very mad or very scared that he was going to fall and his coordination just isn’t the best. So, we just stopped pushing it and wanted him to do it on his own time. But I was not expecting “the” time to be today. So, after I got Peyton’s off I asked him a few more times if he was sure and he was just as positive as Peyton. So, off came his training wheels too. Peyton tried a couple of times and today wasn’t her day. But, I was very proud of her for trying.

So, here comes Cam’s turn. The beginning started off good. He really wanted to try and so I thought yes today may be the day! Then it started to really go downhill. He got very frustrated, angry and even threw his bike at one point. At the throwing of the bike I said it was time to give it a rest for today and we’d try again another day. Well, Cam was not having that. He looked at me and yelled, “I AM NOT GIVING UP MOMMY!! I AM GOING TO RIDE IT TODAY!!” All right kiddo, I am beyond proud that you don’t want to give up and will try all night with you if that’s what you want. I had to fight back tears because honestly I have never seen him so determined to do anything before. So he kept trying and he kept getting really frustrated and at one point yelled “I CAN’T DO ANYTHING! I MESS UP EVERYTHING AND I HATE THIS!” Again, I offered to give him a break and told him right after school we could try again tomorrow. Again, he informed me that he was going to do it and he didn’t want to stop trying. Then a little while out of nowhere he did it! The stars aligned, he got his balance and took off! I could not believe it and just started running after him to tell him how proud I was of him. He got to the end of the road and I caught up to him and he was yelling “I DID IT MOMMY!! I DID IT!!!” Tears streaming down my face and me giving him high fives all over the place I said “Yes you did and mommy is SOO proud of you!” Then he was off again and this time I got to record a little bit of it. While crying like a little baby I have to add. Then he’s screaming “DADDY LOOK AT ME! NOOOOO TRAINING WHEELS DADDY!!” High fives from daddy and he was off again. I was not sure what I was crying more over, the fact that he did it or the fact that he was so determined and even when he was so frustrated and angry he never gave up.

       I have cried many tears lately because of the rough road it has been with Cam these days. But tonight those all disappeared. Tonight we celebrated all night and we will continue to celebrate! He marked a HUGE milestone and I just can’t stop crying out of such pride. He did it! He NEVER gave up and he did it! I think he’ll be dreaming about it tonight because for the first time in what seems like forever I saw a huge smile on his face and he was proud of himself. There are no words to express how amazing that feels to see him actually proud of himself. Training wheels be gone and my little man is off! 

Total Bust

Today was a total bust all around. Cam woke up in an ultra sensitive mood. I mean the kiddo had a meltdown after only being awake less than five minutes. Then another one before he even ate his breakfast. Right then I should have known to just quit for the day. But, nope I pushed forward in hopes that it can only get better, right? Off to school we head and drop started off ok, a little crazy because today is a bake sale which means choices. Cam and choices do not go together well at all. He doesn’t like it and he especially doesn’t like them when every other child is around him. But we made it through and off to class we went. I gave him his hug and head off to the car. Well all of a sudden I see him darting at me through oncoming cars and his teacher behind him trying to grab him with her eyes huge in panic. My heart sinks because he’s coming at me with cars coming at him and he has a look of panic in his eyes. The look of panic however was not over the traffic. What was it you ask? He had left his book from home there yesterday and he insisted he had to run it out to me to take back home. His teacher had tried to stop him but he had it in his head that the book didn’t belong at school, it belonged at home and he had to make sure I took it there. So, after his teacher and I get done with our panic attacks they head back to class and I leave.

It’s time for pick up and out comes Mr. Sensitive. He’s in a bad mood and he informs that he had an accident today. So, now not only do I have a grumpy Cam but I also have more laundry…fun times! I had to run some errands and even with his grumpy mood they had to be done. He and Peyton fought some in the car and then he busts out in a complete meltdown because she told him he was being a bully. So here I am driving, trying to get him to calm down all while it’s pouring down rain. If we don’t know how to have a fun afternoon I don’t know who does. Errands are done, we get home and at some point he had another accident while in the car. Really kiddo? Then it was as if the energizer bunny and grumpasaurus rex took over Cam’s body. He was all over the place and growling at all of us when we asked him to calm down or not snap at us.

We had plans to head out to an air show tonight with friends and Cam was excited about going. But when he gets excited he doesn’t always know how to handle that excitement….well he never knows how to handle it to be completely honest. So he was just more all over the place and when we got there he was louder than usual and I could see in his eyes that he was spiraling out of control. Fortunately and unfortunately they cancelled the show and rides because of the crummy weather. So we all headed back to our house. Cam right away is all over the place and not playing with his friend. Then Peyton is trying to fit in and be a big kid is following in Cam’s footsteps. It was just a complete bust! I had to go in and talk to Cam constantly which lead to a couple of meltdowns and running away from me. I of course wanted to just cry and couldn’t help myself but kept saying how sorry I was for how he was acting.

After our friends left and we put the kiddos to bed Bryan and I started talking. It is harder for us some days than others to watch Cam interact or not interact with others. You look at him and you see a 6.5 year old little boy and when you talk to him sometimes he seems much older than that. But when it comes to social settings I am reminded that socially he is more of a 3 year old. He doesn’t know how to handle the situations and he gets overwhelmed very easily. But I told Bryan tonight that we have to stop apologizing for how he acts. It is him and if we continue to apologize then it makes it seem like we are ashamed of him or don’t accept him for him. How can we ask others to accept him if we seem like we don’t?

I can’t say that it will be easy to stop apologizing. Bryan and I both feel like we have to do it for everything in life. But we are going to try. We are not ashamed of him in any way so we need to stop apologizing like we are. But we are also learning every day on this journey with him. We are learning how to help him and how to understand him too. Some days are harder than others and today was definitely one of those days. But tomorrow will be a new day with no apologies! (Ok…well less)

Do Not Disturb

Today in the world of Cam it started off good. He woke up in a pretty good mood and very little growling at me when I told him he had to get ready for school. I’ll take the little growling because it is much better than a full on meltdown.  He did growl pretty loudly when he didn’t get a lot of playtime prior to putting his shoes on and head out the door. But, my response which he didn’t like “well kiddo if you wouldn’t have rolled around on the floor for ten minutes before actually getting dressed…you may have had some play time.” “GRRRRRRR!!!” That is basically what I got back from him. So growling and all we head to school. Drop off goes surprisingly well, so I head out the door before something changes.

Pick up time comes and he comes out grumpasaurus and all. “What’s wrong kiddo?” “See this door hanging thingy here mommy, I got it in treasure box today and it says DO NOT DISTURB! So do not disturb me, mommy!” Um, excuse me kiddo! Did you hit your head while at school because you must have, to think it’s ok to speak to me that way? I choose to just give him a dirty look and get him in the car. It’s starting to rain and I don’t really feel like dealing with a meltdown in the rain. We get into the car and he snaps about the same thing at Peyton. So, now the meltdown occurs because I tell him he can’t speak to either of us that way. “BUT MOMMY IT SAYS ON HERE YOU CAN’T DISTURB ME!! I’M JUST TELLING YOU TO LISTEN TO THE RULES!!” Yeah, well kiddo here’s my rule… your door hanging thingy is about to go in the trash! This was a short meltdown, with a long afternoon of attitude. He didn’t want Peyton in his room; he didn’t want anyone around him. Such a wonderful afternoon in Cam’s world.

Homework time came and let the grumpiness go to a new level. It’s reading and comprehension, the reading thing he enjoys…the comprehension questions thing not so much. So it’s always a struggle for this type of homework. Tonight was no different, only louder yelling at me when he got frustrated. Slamming of the pencil, yelling that he doesn’t understand or like his homework and tears were all involved in tonight’s homework. So, after awhile I decide the fighting is not worth it and homework time is over. I can just explain tomorrow to his teacher and hope that she’s ok with him turning it in on Monday.

A little Wild Kratts always makes life better, so after the stress of homework he watched today’s episode. It helped him calm down and the rest of the night was pretty good. The door hanging thingy didn’t make it to the trash tonight…will see if it makes it another day tomorrow. 

Passionate Journey

Yesterday we had our Autism Speaks walk kick-off. I was asked to be the co-chair for our walk this year (I still question my fellow co-chairs sanity for asking me) so the kick-off was a HUGE deal for me. I have been on the committee the past two years and tried to help when I could but this year I jumped in with both feet.

I am very passionate about spreading awareness and teaching people about Autism. I believe that once people understand it, they will be able to start to truly accept it. I want Cam one day to feel completely understood and accepted by everyone. I want Bryan and I to be able to go to places and not worry that if Cam has a meltdown everyone will stare at us, make rude comments or kick us out. (Yes, all three have happened more times than you would ever imagine) But, when I said yes to be the co-chair my own anxiety and self-doubt kicked in to overdrive. I have lost friends and family because of my passion to teach about Autism. I have a very low threshold for people who choose not to truly understand Cam and the life we live with him. I have also lost friends and family because they don’t like it when Cam has a meltdown or doesn’t speak or act the way they believe he should. I have also lost friends and family because I believe that you are either all in or you’re not…you can’t just choose to be when it makes you look good. Or I have been told that all I do is talk about his Autism and our life and issues with Autism. (Well, go back to the Walk a Mile In Our Shoes blog and you’ll understand why it’s all I talk about) Since Cam’s diagnosis I have found a voice that I didn’t know I had in me, a fighting voice. He is my son and I am very protective over him. He fights every day in his own way to be understood in a world that is so judging, the least I can do is help him fight the fights he can’t. So, I was worried that because of this passion and fight that I would again lose more friends and family. We don’t have many left to lose so hence the worry. I was worried that me being so passionate about it would be as “ugly” or annoying to them as they believe Cam’s meltdowns are. But, I had to take that chance because I am Cam’s voice in this world and I have to spread awareness any way I can and being co-chair for this awesome walk is a BIG way to do that.

So, when I started working on this like I said all of my anxiety and self-doubt came rushing back. Will I lose more friends? Will I want to harm more family for their ignorant comments and then cause more issues? Will I embarrass my husband with my passion and going overboard? Will I do a good job? Then I had to start approaching people to donate or be a part of the kick-off. So then I worried that they would be mad at me for asking, which would cause an entire issue all on its own. (YES, I realize I am an over thinker and over worrier)

So when people started to say yes when I was asking them to help or when friends weren’t running, I was completely taken aback. Then last night my co-chair, whom has also become a great friend, knew how nervous I was because I am a perfectionist and I wanted the entire night to be perfect, she was there for me. She kept me as calm as any human possibly could. Then my friend came and she had made candles to sell at the event to help raise money for our walk and though I knew she was doing it, it got me completely emotional. Not only did she do all of this for me, but she also missed her son’s first t-ball game of the season to be there for us. And what hit me even more is when I was telling her thank you and her response was “of course Crystal, that’s what friends are for”. I started to cry because I am not used to friends doing that. I am not used to friends being there for me, Cam, Peyton and Bryan like this. I am used to the judging, the rude comments, the turning of backs. So when she said that’s what friends are for it hit me. Cam is not the only one who struggles daily with social interactions, but so do I. I don’t have many true friends, friends who truly accept me and this entire journey with Cam. So the fact that she does and the fact that she said that and I knew she meant it, well it just about brought me to my knees with appreciation. Another friend and her family showed up and her boys were wearing their Team Cameron shirts, which sounds small but to me it meant the world. She had family in from out of town, she has so much going on and yet she made the time to come with her family and show her support. Again, another friend who is accepting this journey and all that it entails. To the person reading this who thinks it is weird that these things mean so much to me, you have to remember that we have friends and family who have all in one way or another turned their backs on us and this journey with Cam. So, when people are there for us, it truly hits a place in our heart that you could never imagine.

I have family in New York who couldn’t be there physically but did everything to be there in spirit. My mom had friends all over town lighting it up blue in honor of Cam. My friend took time away from her family to come and take pictures for the event. I had my amazing husband and kiddos there showing their love and support for not just Cam, but for me and for this fight to raise awareness and acceptance. These are all people that don’t just talk the talk when it makes them look good. These are not just people who are around when the times are good. These are all people who truly care and who truly accept not just Cam but all of us on this journey with Cam.

This is the first time in a very long time that I felt like not only were people starting to understand and love Cam the way I do, but they were starting to accept and understand me. Last night I cried tears of complete overwhelming appreciation when falling asleep. This road with Cam isn’t always easy and for a long time it has felt as though the four of us in this house were traveling it alone. But, I am finally starting to feel not so lonely and feel like Cam is being loved and accepted by the right people. As my friend said last night “if they walked away, then they were never true friends to begin with”. I couldn’t agree more, whether it is friends or family if you don’t get it, you don’t belong in our lives. The road may be hard and it always will be, but I am so very thankful to those few who are walking it with us.