Last One....

It is so hard to believe that there are only 5 days left to Cam’s school year. This has been a very up and down school year. It started out ok, turned horrible and is ending on a great note. There are many experiences that we went through that though they weren’t easy they taught us so much. This has not just been a year of learning and change for Cam, but for our entire family.

Cam started out this school year in his old school. This is a decision that my husband and I went back and forth on all summer. We had discussed homeschooling, public school, private school, you name it we talked and talked and talked some more about our options. But at the end of the day we decided that his old school was what we thought would be best. Now looking back our own fears for Cam were what held us back, but we can only learn from our decisions. About two months into the school year we were hit with so much. Cam’s great grandmothers passed away and he was very close to her in his own way so that was harder for him than most would ever realize. This was also his first dealing with death. Our family dog then passed away, which was Cam’s best friend, so that was another hard loss for him. He was being very bullied at school to the point where my husband and I heard words come out of his mouth no parent should ever hear. “I want to kill myself! Everyone hates me, thinks I am a freak because of my Asperger’s! I just want to be dead!” For any 7 year old to EVER feel this way is horrible, but for our own child to feel this way rips a huge part of my heart away.

The next few months we did our best to show him more unconditional love, to help with the bullying situation at school, to just keep him from continuing to spiral down this deep depression that he was in. The bullying just continued to get worse. You don’t realize how bad bullying is these days in school until it is happening to your child and you don’t realize how little some schools will do until you as the parent are fighting for it to stop for your child. Everything we were trying to do didn’t seem to be helping. So, on a Tuesday I picked him up from one school and on Thursday he started at a new school.

For a child who hates change you can imagine our concern with how well he would do with this abrupt change. I dropped him off at school that first day with my heart in my stomach and got to parent pick up about 2 hours early. Yes, I was THAT mom that day. Him coming out to my car with a huge smile on my face was all I needed to let me know we had made the right decision. Since that day there have been a few bumps in the road but for the most part it has been an amazing transition. He is happier than he has ever been and he is back to loving school and more importantly loving life.

Yesterday we had a discussion about his birthday coming up in July and I was reminded though that no matter how happy he is there is still so much further we have to go. I asked him if he wanted a party this year and his response brought tears to my eyes “mommy no one will come, so I just want to go somewhere special.” I tried to explain to him that he does have friends, he has made a couple of wonderful friends at his new school so I was a bit surprised by his answer but then his next sentence helped me realize he is still struggling “they are my friends but I still don’t think I am good enough for them to want to come to my birthday party.” Those words broke my heart in a million pieces. Why does my child feel this way and will he ever feel differently? It is my job to do everything I can to make sure he one day does feel so much better about himself and I can promise him and whomever reads this that I will do just that.

I started writing this blog as a therapy for myself and to try and allow people to see how our life is with Cam. I have learned this school year that my therapy isn’t really in writing this, it is in making peace with Cam’s diagnosis and the life that I had planned for him when I was pregnant with him was going to be completely different than what his life will be. My therapy is mending broken fences with family and more importantly making my family, my husband, son and daughter a priority. I was so worried about pleasing others, about spreading the word about Cam’s struggles that I lost sight of what’s important. Living and enjoying the most amazing moments with the ones who matter the most are what is truly important. I have learned through this blog journey that some people can read my words every time and will always treat my son differently. They will always watch him closer than other children when we have play dates. They will always talk slower to him because for some reason they feel they need to. This blog has taught me that people who I never thought would read our journey have and those people have reached out to me and their words have changed my life for the better. This blog has been a wonderful journey for me.

Cam has a long road ahead of him but instead of sharing every step, instead of trying to change peoples minds who will probably never be changed, instead of focusing on everyone else….I am going to focus on living our life with Cam and enjoying it. I am going to spread awareness in different ways because that will always be a passion of mine but for now it won’t be through writing. I have enjoyed sharing our journey thus far but now it is time for me to live it and put my focus on what is really important. Thank you to whomever reads this, thank you to those who I never thought would read this and thank you to any of those that might be looking at children in a different light because of anything they have read here. I am signing off….in the words of Cam’s sister, “peace, love, donuts and sunshine!”

I Held It In Mommy

“I held it in mommy, I wanted to scream but I held it in.” The words I never thought I would hear Cam say because I honestly never thought he would ever be able to hold it in or understand that he was able to. And when I say "it", I mean the meltdowns, the screaming and kicking, the yelling mean words that he wouldn’t remember after the volcano that erupted in him calmed down. Had you told me 3 years ago when he was diagnosed that there would ever come a time where my son would be able to hold it in, I would have told you that you were out of your mind. Not because I didn’t or don’t believe in my son because I do with every ounce of my being. But because we had been dealing with these volcanoes for so long, we had been dealing with the phone calls to come pick him up from school because of these volcanoes for so long that I just never saw a possibility of a glimmer of hope. That is until today.

Today I arrived at parent pick up early as I always do. I arrive early so I can be one of the first cars in line so Cam can see me as soon as he walks out to the parent pick up area because if he doesn’t see me he goes into complete panic mode, his severe anxiety kicks in and well it’s just not pretty. It has happened once that he didn’t see me right away and it wasn’t pretty. Ok, I got off track….so I arrived and I heard the fire alarm for a fire drill going off and I saw the kids in the area they are suppose to go to for the fire drill so I honestly didn’t think anything of it. That is until one of the administrators came out with what appeared to be a yellow flag in his hand and all I could see was hand gestures to the parents in their cars in front of me, they started driving off and my heart sank. The news has put the fear of God in me when it comes to dropping my children off at school thanks to all of the school shootings, stabbings, etc. So yes that is where my mind and my heart went. Do I over panic? Absolutely and I know that. So he came to my car and my panic was changed to worry for Cam because he told me to drive over to the other side to pick Cam up early because the fire alarm had broken during the drill and had been going off for over an hour and they were allowing us to all take our children home early.

My heart then sank completely as I drove over. I thought for sure I would pull up and see Cam in complete meltdown mode. He is not a fan of the loud noise of fire drills and this had been going on for over an hour! In my mind I was ready for the worst. Then I saw him and there was no meltdown going on at all. He was with his class and the other classes sitting there waiting patiently. I could see the confusion and worry on his face but he wasn’t melting down. The staff was wonderful, they got him right away and brought him to my car. And as soon as he got in I could just see so much worry, so much stress and confusion in his little face that it broke my heart. I said “it’s all over now. Mommy can take you home and it’s all over. Are you ok?” Then he sat there, shaking a little bit and said “I held it in mommy, I wanted to scream but I held it in. I didn’t get to see my speech teacher, I didn’t get to have my snack, I didn’t get to get my backpack, my lunch box or my favorite book. I didn’t like the noise it was so loud and all the kids were loud, I didn’t like it at all mommy.” He just kept saying for a few minutes how much he didn’t like it and how upset he was about not having speech today. He didn’t understand why his speech therapist that always comes to get him after recess never came. We talked about when the fire drill started and it was at the same time she usually comes to get him. He was worried that she was never coming because she didn’t come today. So once I helped him understand that, we went through all of the other things that upset him. But I kept telling him how very proud I am of him for holding it together so well. He said to me “mommy I don’t know how I did it, but I did.” Honestly I don’t know how he did it either but let me tell you I was beyond proud and yes I sat there driving him home with tears of my pride running down my face.

Cam amazes me with how far he’s come. Are there still meltdowns? Yes, but not as many as there once was. Are there still days that I just cry because of how hard they are with him?? Absolutely, I would be lying if I said otherwise. This journey with Cam isn’t easy, but it is so worth it. He continues to shine and I am so happy that I am his mom and that I get to be a part of this journey with him. 

Disappointment....

Some days are harder than others in this Autism world. And today those words ring so true. We have been riding a pretty good ride lately on the Autism rollercoaster of life. The school change for Cam has been amazing. He is really making progress socially with working so hard to make friends, be a good friend, etc. He has a long way to go, but I could care less about that, he is trying and that is all that matters. His meltdowns are few and far between these days. And when he does have them they are not nearly as bad as they were a year ago. Then, to top it all off we received Cam’s report card and he got straight A’s! His old school didn’t give letter grades, I won’t ramble about how much I disliked the grading system there, but I will say it so nice to see actual letter grades. We have been celebrating for the past two days because we want Cam to see how very proud we are of him and we want him to realize how very proud of himself he should be.

Then today our rollercoaster that has been heading high into the sky came crashing down and fast. Cam has been doing Tae Kwon Do since January and he has been trying extremely hard to master the different techniques. We have been waiting for two weeks to find out if he was going to test for his yellow belt this coming Saturday. It is all Cam has been able to worry about and I mean his nerves have been on overdrive. He wants the yellow belt and in his eyes he should get it because he has never missed a class, has tried his hardest and does his best. But, today Cam found out he isn’t ready to test on Saturday and he is crushed. He left class in tears and shut down once we got into the car. I tried to talk to him but he said he didn’t want to talk about it. It completely broke my heart. I sat with tears streaming down my face driving him home, wishing I could just give him a hug and make it all better. His coordination is completely against him and I knew it. But I also knew he was trying the hardest he’s ever tried at a sport and I was hoping that would get him to the test. He hasn’t shut down like this in a long time. We headed out to dinner in hopes that, that would bring up his spirit a little but it didn’t. He sat there upset and still not wanting to talk about it. My heart was hurting for him.

My husband and I had been concerned for a little while that the pressures of school, socializing, therapies, other personal struggles and then adding the pressure of testing for yellow belt were a little too much for Cam. Tonight he went to bed not speaking about it…until I went to check on him. He was sitting up, picking at himself to make himself bleed. He hasn’t done this in forever. He used to do it all of the time when he was upset, anxious, nervous or sad because he didn’t and still doesn’t know how to express himself in words so he picks at himself and hurts himself. Tonight when I saw him doing it, I knew that though he wasn’t talking, that it was because of the stress and disappointment of not being able to test. I hugged him, told him how very much I loved him and how very proud of him I am and then he opened up. He said “It’s not fair! I try like the other boys but I just can’t do it like them!” Once he was able to get that out we talked about how upset he is and how he doesn’t feel like he fits in because the other kids who have been there a less time than him are already doing things better than him. His coordination has always been against him on any sport he has tried and Tae Kwon Do is no different. If anything his issues with coordination shine brighter in Tae Kwon Do. We talked about the stresses of school, homework, friends, etc that are harder for him than others and how his dad and I never want him to add extra pressure if it’s not needed. We don’t want him hurting himself and his self esteem going down any further than it already is over any sport. We don’t want it to happen over anything, but especially a sport. We discussed his amazing report card and how that is what matters. I told him that sports aren’t for everyone and that’s ok. We discussed how incredible he is at Math and Science…he truly amazes me every day with how smart he is in these subjects.

I am hoping that he went to bed feeling better. He hugged me and told me he felt better. But, with Cam we just have to hope because when he’s done talking he completely shuts down. I wanted him to know that his dad and I are so very proud of him and that no belt testing was going to change that. The pressures he has, the obstacles he deals with every day are harder than any sport he could ever play. Who knows if he will continue, after seeing him hurting himself tonight over the disappointment and the feeling of complete failure I am not sure it would be best for him. No, he won’t always get everything he wants in life, just like he isn’t getting this yellow belt and no I can’t protect him from everything. But, if I see him spiraling into a depression, hurting himself and shutting down….nothing is worth that, absolutely nothing and I will do everything in my power to prevent it from happening. His road in life is hard enough and no belt is worth making it any harder. 

He's Teaching Me

Since Cam has been at his new school (3 weeks now can you believe it?!) I have had some worries about him making friends and fitting in. But with those worries it has had me thinking of my friendships also. I tend to try and get into Cam’s brain if at all possible so I can help him and with doing that it makes me take long looks in the mirror. Friendships are hard, family relationships are hard….so if it is hard for us as “neurotypicals”, imagine how it is for our children on the spectrum.

A great example was today for me looking in the mirror was, I had to attend an event with some family and friends. To say some of these family members are not a fan of mine is an understatement. Do I know why? Nope….I haven’t a clue. I can and have tried to guess, but I have never been told the reasons. Anyway…today prior to going to this event I was in complete panic. My heart was racing, I was physically sick to my stomach, my head was spinning, my hands were sweating, and it was completely awful. I always have anxiety when going to events with some of these family members because though I try not to care what people think of me, I do. Especially when it comes to family. So today my nerves were in complete overdrive. I, at one point driving there felt like I couldn’t breath. But, I was able to get my nerves somewhat together, tried my best to be myself and almost did a happy dance when it was over.

Then driving home, feeling relieved, it hit me. This must be what Cam feels like every time he has to deal with new people, eye contact, talking to people about things he doesn’t like, loud sounds, being around people who don't understand him and his differences, etc. What I went through today is exactly what my son goes through multiple times a day. I can’t imagine having this feeling every day. But….he does.

He struggles every day in “our” world, yet every day he is learning to hold it together. There are days where he holds it all in at school and then completely melts down at home. But don’t all of us some days want to have a good melt down? I knew today what was going on inside of me and why, but he doesn’t understand or know why he feels the anxiety, the anger, the sadness or frustration that he has inside. He can’t put into words any of it so he melts down. I don’t think I ever completely understood it until today. It made me cry to know this is what my son goes through on a daily basis.

Even though he has to deal with all of this inside, Cam is beginning to make friends at school. He is trying to relate to these friends in their interests and ask questions to show he cares. He is defying the odds that so many others informed me he would never be able to do when it comes to friendships. He is learning how to handle uncomfortable situations or communicate that he is uncomfortable without completely melting down. Yes, he still has meltdowns. But, they are less and I am seeing hope for my son to one day have true friendships and true family bonds.

My worries for Cam will always be there, but I believe through my own life experiences, not just this example, but many others, that I am starting to understand my son a little more. I am learning that us neurotypicals who think we have it all together and it’s the ones on the spectrums who don’t when it comes to family and friends….well folks we are wrong. If anything I am learning more from my son on how to hold it together, how to act and how to handle them better. Maybe it is Cam who should be worried about me because he seems to be holding it together and succeeding much better in these avenues than I am.  

Celebrating the New

It is hard to believe that tomorrow will mark two weeks that Cam has been at his new school. These two weeks have completely flown by, yet it seems like he has been there all school year. The change has been a completely positive change that I now wish we had done long ago, but I am trying to remind myself that I  can’t look back, I just have to be happy that we finally made the change.

Last Friday I had my first parent/teacher conference with Cam’s new teacher. I didn’t sleep the night before and was pretty sick to my stomach all day with nerves. This entire school year at Cam’s old school every conference ended with me in tears, fighting for my son’s rights, fighting for his teacher and other staff members to see my son and not just a diagnosis, fighting for the bullying to stop, I think you’re getting my point. Each meeting was Hell. So, I was trying to stay positive, telling myself it was a new teacher, new school, new possibilities but still had everything from his old school playing in my head. 2:15 could not come soon enough and then when it did come I wanted to run. That is until I sat down and the first words out of her mouth were, “I just want to let you know what a joy Cam is to have in my class and I am really enjoying getting to know him”. Now I was holding back tears, but not fighting, you don’t understand my son one bit tears, but happy tears. We talked for almost an hour and not once did she have anything negative to say. No, she didn’t tell me he was perfect but the couple of social issues that she has noticed she turned into a positive of something that we, together can work on. Academically she said he is doing amazing. She said he’s already making friends and has fit right in as though he’s been there all school year. She let me know that she will not treat him any differently and that there are some days he will come home not liking her because she is there to be his teacher not his friend and she will push him to be the best he can always be. Seriously, I wanted to hug this woman. I don’t want him to be treated differently than any other child, if he is then his differences stick out more than they already do and then his self-esteem continues to spiral downward. Yes, accommodations need to be made but if she doesn’t point them out to the entire class they will never even realize these accommodations are happening. She sees a child not a diagnosis and I love that! When Cam, his sister and I walked out of the classroom, Cam turned to me and said “mommy, I must be doing good enough for this teacher to like me because she was happy in the meeting and you aren’t crying like you always did at my old school”. Well now I am kiddo because it breaks my heart that one, he feels like he’s good enough now when he should have always felt like he was good enough for any teacher and two, I didn’t hide my tears well enough from him in the past.

Fast-forward to today and his school had a run-a-thon to raise money for the school and to help promote fitness for the students. The goal was for the children to run 20 laps in two hours or less and those 20 laps would equal approximately 5 miles. Cam usually isn’t much of a runner so I wasn’t really sure how well this was going to go and there were a ton of students running all together, so I was worried he would be overwhelmed. He had told me in the morning he was going to do all 20 laps but again my worries put doubt into my head for him. Well, leave it to my son to completely prove me wrong. He didn’t get overwhelmed at all and he was determined. In a little less than an hour he ran 14 laps, which equaled approximately 3.5 miles! I believe it is safe to say, I know he would have accomplished his goal had a bad storm not hit and they had to end the run-a-thon early. But, he did it and he never once gave up. He ran 99% of it and it was so awesome to watch him be so happy with his friends.

The change was scary for all of us but it was by far one of the best decisions we have made for Cam in a long time. The teachers at his new school really care and they are seeing Cam as a child not as a diagnosis they don’t feel like dealing with. His self-esteem is improving, the depression he was in is going away and he is happy and loving school. The struggles that Cam went through this entire school year at his old school is something that I wish I could erase for him and I wish we would have made this change earlier but as I said earlier I am trying not to dwell on the should haves. “That” school is an amazing school and has turned Cam into a different child in just a short two weeks. Celebrating the new and moving on from the old. 

I Lied....

I have lied….lied to those who read this blog, lied to friends and family and lied to myself. Funny thing is I hate people who lie and yet as I sit here I am admitting that I have lied. I have allowed myself to sit in silence recently and to really think. If you haven’t done that for a while, I highly recommend it. It is amazing what you can find out about yourself when you are left alone with your thoughts. I wrote a while ago that I had accepted Cam’s differences and that I was riding a happy train. Well, when sitting in my complete silence with my own thoughts, I realized I had lied. Not intentionally but I had for sure been lying. I haven’t been on the happy train with Cam’s diagnosis….you know what train I have been on? The depressed train and I have been on a one-way ticket to Gloomville. To be honest it isn’t just Cam’s diagnosis that has had me on this train but all that has come with it. The fighting with schools, insurance companies, family members, you name it and I feel like I am constantly fighting for my son. But, do I always have to be fighting? I am definitely a different person today than I was prior to his diagnosis. I am not the happy person I used to be.

I am currently failing as a wife, though my husband will tell me differently because he is just that kind of man who I am so fortunate that he loves me beyond all my flaws and there are many days I question his sanity for doing so. But I am not currently the wife he deserves. I have failed or am failing some of my friendships. No, not all friendships that I have lost along this journey are my fault….but there are some that have been damaged or lost along the way. I am failing as a mom. Though I do my best to always be there for my children and love them more than they will ever know. I have allowed my own depression to not be in the moment fully with them. I have failed or am failing some family members because I have allowed my own depression or life problems to get in the way of being there for them. So, at the moment as I am writing this I am finally being honest. I am putting it out there because I hate people who lie and I, myself cannot continue to live this lie or continue to fail those most important to me.

My journey in life with Cam is so different than I ever imagined it would be. Not because he doesn’t play certain sports, though since I am being honest, it does pain me some days when I see children playing all of these different sports, having fun with their friends while doing so and then I see my son, who just can’t. It’s not because he isn’t the son I always wanted because he is and so much more. It’s also not because he isn’t amazing because my son is beyond amazing. You need to know anything about minerals, animals or dinosaurs he can tell you whatever it is you need to know. He can tell you the worst knock knock jokes and still make you laugh uncontrollably because of the way he tells them. My son’s memory amazes me every day. He will tell me how old he was when he received a gift and who it was from and it starts as young as the age of 2 and he’s always right or when and where we were doing something or he learned something and he is always right. I can’t remember where I left my glasses at and my son remembers things from the age of 2. But, my journey is different because I never imagined having this anger at the world for my son’s struggles. I never imagined being depressed because I was so angry and hurt by the people who don’t understand my son. I never imagined family turning their backs on my son or people telling me the doubts they have of my son’s capabilities. There are so many aspects of this life journey with Cam that I never imagined.

I didn’t realize how depressed I really was until all of these changes with Cam’s new school happened. The fights that I had to do for my son to get the help he needed and deserved with his old school were unbelievable. They saw a diagnosis, not a child. I was so angry but I allowed myself to pretend like I was riding on the happy train. I continued to live a lie, a lie that I was allowing to destroy my entire world. I gave a friend of mine advice the other night to just lock herself in the bathroom and do the ugly cry. I said the bathroom because lets be honest as mom’s that is pretty much the only place we can go that our children won’t follow us and if they do and the door is locked they will eventually go away out of pure boredom. I decided to take my own advice and I just let out the ugliest cry you could ever imagine. Sad thing is I probably could have gone on for days but I sat there for about an hour just letting it all out. I didn’t realize how much anger, depression or sadness I really had in me until I just let it all out. I told my friend it would make her feel better and I was right, it really does make you feel just a little better.

I am going to work on getting myself out of this depression. My son has Autism, it is not the end of the world and I realize that. But, his struggles some days feel like they are the end of the world. The fights that I fight some days feel like my world is going to end. But, first thing I am doing to start fighting against this depression is to put this out there to whoever reads this, I am not going to allow myself to live a lie. I want to go back to being the happy person….the truly happy person I once was. I want to stop failing the people in my life who mean the most to me and I can’t do that if I continue to live this lie. My son has Autism and I am going to stop feeling sorry for myself because of it. I don’t allow him to use it as a crutch to not succeed in his life and I am not going to allow myself to use it as a crutch in mine.

(On a complete side note Cam’s doing AMAZING in his new school and there will a blog post about that soon)

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. 

Big Steps.....

Can you believe it is almost the end of January already? This month has completely flown by! Over Christmas break we started Cam on new ADHD medicine. (I get it if you are against medicine, but this is a judgment free zone and I know what is best for my kiddo) So, over the break when he started the new medicine we started to see a huge change in Cam and when I say huge…it was as if I had my sweet, loving and funny boy back. His old medicine worked for a while but he started having huge meltdowns and aggression out of nowhere. So his neuro decided to change his medicine and see if that would help. It helped so much more than I could have ever imagined. But, then school started up and though I knew he was doing great at home, I was concerned that school was going to be a different story. Well, we are three weeks into school after Christmas break and he has been doing amazing. The teacher said it is like a different child has entered her room and she can see a huge positive difference in him. I have cried happy tears every day picking him. Which may sound a bit crazy, but let me remind you that my son was kicked out of 3 different pre-schools, kindergarten at his first school wasn’t easy and we have hit many, many, many did I mention many hurdles since. So, when I, as his mom am so used to hearing nothing but negative about my son and his issues, start hearing such positive reports after so many years of negative, of hurdles and struggles, I cry many happy tears. I as his mom see all of the good that others miss, I see past his diagnosis, his differences, his struggles, but most others don’t. Others always focus on the differences, the diagnosis, and the struggles. I have had so many different teachers, friends, family members, strangers point them out that you would think I would become numb to it, but really it hurts more and more each time. But, now my son is having good days, shoot we’re hitting good weeks at school and finally I am hearing praises. I honestly never thought I would hear “he had an amazing day” or “he received extra computer time for having such a great day”. Words like that are foreign to me, which is sad but it is true. Most of the time my son isn’t given a chance because they see his diagnosis and his differences first and don’t see the rest of him.

So, since school is going so great I decided to throw something else in the mix. Sports and Cam don’t go well together. He tries hard, but his coordination isn’t there yet, his ability to work well on a team isn’t there and well lets just say we haven’t had much luck over the years with sports. So last year we didn’t put him into anything. Though I will never allow his diagnosis to stop him from doing anything, I also am learning (slowly) that he just may not be able to do the things I want him to do. This year however, I decided we were going to find something extra curricular for him to do. He needs to get out there and learn how to listen to others, make friends, socialize and be a 7-year-old….Autism and all. I researched for clubs and well there just isn’t much for his age, I looked into sports and kept finding team sports or golf, both of which he has no desire or can play at this time. Then it hit me, at our Autism Speaks walk he loved the Taekwondo teacher and spent some time talking to him. So, lets throw caution and lets be honest my worries to the wind and take him to a class. I discussed via email all about Cam prior to the class and the instructor didn’t run away, so I thought that was a good sign. Cam was so excited when I told him about the class. He was on count down the day of; every minute after I picked him up from school I heard “is it time? Can we go now? How about now?” It was cute and heartwarming and shot my nerves into full force all at the same time. Off to class we went. We had a long talk in the car about listening, doing as he’s told, etc. We got there and I could see the nerves in his little face. I kept telling myself to hold it together (shockingly I did) and reminding myself it is good for him. Class began and I held my breath for most of the 30-minute class. My nerves at this point were out of control and my worry was on overdrive. But, he did great! Did he stumble? Yes. Was he awkward? Yes. Did he give up? NO! Did he love it? YES! Even though it was hard for him and he was completely uncomfortable with new kids, new teacher, new place…he did amazing and even better he asked me to promise to take him back to the next class. Which of course I said yes, cried behind my glasses in the car with pride and celebrated with a little happy dance when we got home. Who knows if this will be the “thing” that is right for him, but no matter what he is excited, he wants to do it and he is willing to try it. Right now, at this very second, that is all that matters to me.

I told my husband on New Years day that 2014 is going to be our year. We have had one hell of a ride on this Autism rollercoaster, put other life issues being thrown at us and everything in between and I believe we deserve a great year. Cam SO deserves one. At the age of 7 he has had so many people against him, differences thrown at him, people not wanting to understand him….dang it he deserves an amazing year! This is a year of positive changes, positive thoughts and dang it awesomeness for my not so little any more guy and our family. Autism rollercoaster….this year you are going to be good to us!