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)