He has a friend...

“Can I come over to your house to play with Cam?” Those are words I honestly have hoped for so long to hear but truly never thought I would. Not because I don’t think my son is absolutely amazing because I do. But because my son doesn’t know how to be a good friend, though in his own ways he tries so hard to be. He knows how to play what he wants to play and if you don’t want to play that game or with those toys he doesn’t understand how to handle it. He usually shuts down or cries because he takes it personal. His play dates in the past have always been because I have been friends with the moms and have scheduled them. They have always been what felt like a forced play date. Not that these children didn’t play with him because they always have, but if I and the other moms were honest with ourselves it wasn’t because the other children actually asked to play with Cam. They were never  because a child has actually asked to play with him…never been because a child actually wants to play with him. And I understand it all. Cam does not make it easy…he doesn’t make it easy to be his friend. He doesn’t understand friendship…yet.

BUT and here’s where the tears start flowing…I heard those words. A little boy from Cam’s class came up to me at parent pick up and asked if he could have Cam come over to play or if he could please come to our house to play with Cam. I tried not to act surprised and play it off like this always happens. But, I was in complete shock and can’t even begin to describe how happy I was. You should have seen Cam’s face all lit up with a smile from ear to ear and begging that I let it happen that very second. Of course I couldn’t let it happen that very second but I agreed with Cam that I wanted it to. I wanted that smile, that glow to stay on my sons face forever. So, I told the little boy that I would talk to his mom and we would make it happen. We walked to the car and Cam was so excited and I was thankful to have sunglasses on because the tears were flowing. MY son….MY world…has a friend! The things that most parents take for granted….this is one of them. As a mom to a child with Autism this is a day that I never thought would happen.

I watched the next day at pick up as Cam scrambled to get his folder and things ready to go home in the classroom and this little boy…this friend of Cam’s stayed and helped him gather everything. More tears…thank goodness for sunglasses! They walked out together and said bye to each other and the little boy reminded me that he still really wanted to play with Cam. Seriously…I wasn’t dreaming! This is a reality for my son! That same day I received a message from this little boys mom telling me that her son was talking and begging to play with Cam. Really! I know I sound like I am so shocked that someone wants to play with Cam but I promise you I know how AMAZING my son. But as I have said I also know he doesn’t make it easy to be his friend. So, we have scheduled the play date for this weekend and both boys are so excited. They are already planning what they are going to do while he is at our house playing. I have to admit, I rearranged Cam’s room to make it more special for Cam and I have already planned in my head some snacks and to order pizza. I know how special this is for Cam, so I want to make it as great of a time as I can.

I am not sure who is more excited for Cam…him or me. But, I can tell you that this is a huge step for him. One that I am so proud of! We have waited what feels like forever for this day to come. My son is in second grade and he has a friend. Wow….that sentence brings so much pride to my heart. 

Work In Progress

Over the Summer I did a lot of soul searching. This past year has been a very rough one for me when it comes to certain friends and family members. By family my character and parenting has been attacked and by friends my attitude has been questioned. So I decided I didn’t want to be “that” person who said it was always everyone else’s fault….it can’t ALWAYS be someone else’s fault. I deal with family members who always put the blame on everyone else because it is easier than them looking in the mirror and seeing that they make mistakes…I do NOT want to be like them. So, I stepped back away from most of my friends, stayed to myself with my kiddos and did a lot of thinking. 3 months of Summer gives a person a lot of thinking time…even with two crazy kiddos running around. What did I come up with? I came up with that I have changed a lot since becoming a special needs mom and some of it is for the better and some of it….well though hard to admit to myself let alone anyone who reads this…but some of it was definitely not for the better. I learned that I needed to realize not everyone will understand my journey with Cam and that it has to be ok…I have to allow it to be ok. I need to remind myself that as long as they want to be on this journey then that is really all that matters. I learned that I have to remember even though I have to fight fights every day for my son, whether it be with schools, insurance companies, bullies, family, etc to handle him better, help him better, be there for him better…that not everyone do I have to fight the fight with. Now, I am sure to some of you that makes no sense at all but to me it was like a shining light went off. I had closed myself off to a lot of my friends because I forgot to shut off the fighter hat around them and put back on my friend hat. I am so used to fighting for what is right for Cam, for what he needs and deserves that I became this angry person inside and I wasn’t just hiding it inside any more….I was projecting it for the whole world to see and it wasn’t pretty.

How can I walk this journey alone? I can’t. I need friends in my life...I want friends in my life. But, why would they want to be in my life if all I do is push them away? Is it their fault my son is Autistic? Are they the ones bullying him? Are they the family members not treating him right? The answer to these questions and many others was no. Yet, I still pushed them away. I still found reasons why we shouldn’t be friends. I had become the bitter, angry person that I said I never wanted to be. When I finally stepped back and looked in my mirror my reflection wasn’t pretty and it definitely was not the one that I wanted to see. I once had a friend tell me that I put up walls and she was right. I do. But, as a special needs mom you feel like you are fighting so much for your child that you forget when to stop. I felt that no one understood my journey and if they didn’t understand then they couldn’t possibly be in my life. I was allowing Cam’s diagnosis and the fights that I was and always will be fighting to completely take over my life and put up walls all around me. These walls were so big that I was having a hard time seeing over them to the outside world.

I learned that yes, I am a special needs mom. But, I am also so much more. I am not perfect. But, I am a good person. I am learning to slowly tear the walls down. Not everyone who was around before is around now and though I am sorry for that I am learning to be ok with that. I am learning to stop fighting every fight and more importantly to stop fighting fights that don’t need to be fought. I am learning to be a better friend, better mom, better wife….a better person. I am learning that though life with Cam has a lot of bumps in the road that a lot of people will never be able to understand, that as long as they’re willing to ride the ride with me and be there for me I should count my blessings. I am a complete work in progress…however, I am starting to see the sun through the bricks in my walls so that must mean I am slowly making positive progress. 

Good Enough

“My son made the honor roll.” “Yeah, that’s great….my son made straight A’s.” “My daughter did her first back handspring today.” “Oh that’s nice…my daughter has done those for years.” Do either of these conversations sound familiar? Maybe not these exact ones, but similar. Times where you are being a proud parent and then another parent feels the need to make sure their child does something just one step better than yours. I feel like our society is in a constant “one upping” battle. I would say it is just us moms, but I have overheard dads being guilty of the same scenarios. “My son scored a touchdown today.” “Nice man….my son scored 5, one being the winning one for the game.” Instead of just saying, “that is awesome. You must be so proud.” Our first instinct is to say our child has done it and not only did they do it, but they’ve done it better. We are so worried that maybe they will think their child is better than ours or maybe they in fact are a better parent than us because their child is doing something better or faster than ours.

I went to a birthday party once that there was a face painter, train ride, bounce house AND petting zoo. Seriously, for a kids second birthday! What is the third birthday or shoot even wedding going to look like? I overheard the mom asking everyone what they thought and did they think it was the best party they had ever been to. So, was the party for the child or was it for the other moms? We are so worried about being “the best” that I think we forget to uplift each other and just be “good enough”. Keeping up with Joneses these days is getting harder and harder and let’s be honest more and more expensive. Not just money wise, but it is also costing friendships, causing self-esteem issues and if we’re even more completely honest we’re most likely not enjoying the work of keeping up with the Joneses. I mean is it not exhausting trying to have a better party, better clothes or what seems most important….having to make sure your kid is better than everyone else’s?

Instead why can’t we be happy being “good enough”? Why can’t we be happy with our children being “good enough”? Let’s be honest, our children see or hear us trying to compete and they will feed off of it. Either by trying to be better than each other and then if they’re not meeting or beating those high expectations, they will most likely have very low self-esteem or some will become bullies because they are so used to hearing their parents say how wonderfully perfect they are at everything that they will start to forget being “good enough” is better than thinking you’re perfect and better than others. As adults we will probably have better, more supportive and more genuine friendships if we stop trying to top each other and stop trying to have our children top each other. If we slow down and really appreciate what our children are good at, what others children are good at and what each of us are good at; I think our lives would feel more meaningful.

If your child does something BRAG about it and if a friend is bragging to you about their child…listen, congratulate and don’t try to think of what your child did to compare or compete. I personally am a complete bragging mama and I am sure it annoys some, but that is what I am and I am proud of it. But, I also love to hear about what my friends or their kiddos are doing and succeeding at. I have lost friendships because I can’t keep up with the Joneses or because my kiddos are “good enough” and not perfect. But in reality were they true friends? Lets stop trying to keep up with the Joneses and start motivating, cheering and loving each other more. 

My Passion

What is your passion? A question a friend of mine posted the other night on Facebook. The question got me to really start thinking. As I was reading others answers, I sat there thinking what is my passion? Hers was her cooking and her passion to help find a cure for Cancer. Others were there jobs, helping others, etc. But, what is MY passion? When you become a stay at home mom you sometimes forget that there is a life outside of being a chaperone, a therapist, a maid, a cook, a play buddy, etc to your children. I am not complaining at all about being a stay at home mom. It has been the best thing for both of my children since my husband and I made the decision for me to quit my career and stay home. But, what is my passion?

Before I had children my passion was my career and even after I had Cam for awhile it was still a major passion for me. It pushed me and gave me a rush that I loved. After awhile that rush stopped and I felt like I lost a passion for anything. But, then Cam was diagnosed and a little fire started inside of me. At that time it was a fire…a passion for knowledge. Because  I wanted to learn anything and everything I could about Autism. I didn’t want to know the “why is he Autistic” so much as I wanted to know how his brain worked differently, how I could help him and how would his life be in the future with Autism. I went to every seminar I could, I read every book I could and I talked to every doctor and therapist I could to get all of this information. I still do all of this…hence why I never sleep. Then I became involved with the group Autism Speaks. I volunteered to help with the first walk in our area a few years ago and it helped me to learn about the organization and being involved with this first walk ignited a bigger fire inside of me. Being a part of this is a way of me helping teach people about Cam, spreading the awareness about Cam and learning that there was a big Autism family out there that I never knew existed.

But, I want more….I want to do more. One walk a year just isn’t enough for me. Don’t get me wrong, I LOVE the walk and all that it does for our community. I LOVE Autism Speaks and all the fights that they fight for us, the awareness that they spread for Cam and all of the other children. BUT and here is where my passion comes in big time….I want to do MORE for the Autism community. When Cam was diagnosed my husband and I felt so completely alone and trust me there are many, many days that we still do. But, I now have friends who have children on the Spectrum who understand our journey and I want to change the world for not just Cam but for their children too. I have a friend who has a teenage son with Autism and I want her to know that the world will understand her son and will help him and that he will have an amazing future. I have a friend with two boys on the spectrum and I want her to be comfortable going into a store or a restaurant without having to basically cringe thinking about the stares or rude comments she will get if one of them has a meltdown and they will have a meltdown because they get over stimulated. But how can they learn how to control it when she or anyone in her same shoes….including myself is afraid to go out in public because it is easier to stay home and not deal with the stares and rude comments. I have another friend who I want her to just know that her son will have the brightest future possible. I could list all of the friends…people I want to help, but I think you understand what I am trying to say. I want businesses all over to offer sensory friendly times for children and adults with Autism. I want children and adults with Autism to be able to enjoy all of the amazing things in life that “normal” children and adults can. I want parents right after they hear those words “your child has Autism” to not feel alone and like their entire worlds are coming to an end. I want them to have someone to turn to…a friend who’s been there and can help them.

Now I know I can’t change the world in a day, but THIS is my passion. I want my community to understand, love and accept these amazing children and then spread it through the rest of the world. My passion is changing the way people look at not just children with Autism but also how they look at the incredible parents who are raising these very special children. I want the word Autism to not come out sounding like a four letter word. My passion is Autism and changing the way people look at it, treat it and treat those dealing with it. What is your passion? 

Look Back

Have you ever went back from your child’s original diagnosis and read all of the evaluations, different doctor’s papers, etc? If not I highly recommend it. Not because I think looking back in life is always the best option, but when it comes to this I think sometimes it is. I did this the other day for the first time and though my intention wasn’t to read it all, I was actually just looking for a specific date of something for one of Cam’s papers I was filling out, but instead I found the answer and a whole lot more.

I started from the original diagnosis letter, September 9, 2010…the day that our life changed forever. Reading this diagnosis brought me back to that day. I had fought with everyone that something was different, unique about Cam but others thought I was either crazy or just an overprotective first time mom. But, as you moms know our mother’s instinct is something not to be reckoned with. So, on September 9 we went to have the psychiatrist that we were referred to, to have Cam officially evaluated. Within minutes the psychiatrist saw all of the signs for a diagnosis but he continued for the next hour or so to evaluate and test Cam and go over our concerns. Then he looked up and said, “your son has a form of Autism called Asperger’s and he also has Attention Deficit Hyperactivity Disorder and in better terms he is a child with high functioning Autism.” I sat there with tears in my eyes and my husband sat there stunned. The doctor looked at me and said and I will never forget it “I can tell you are crying because you knew. You knew the diagnosis before I even said it.” Yes, reading that letter brought me back to that day and again I sat there and cried. Almost three years ago and it still hits me like it was yesterday. Now you’re probably thinking “why the hell are you telling me to go back and read all of this if it caused you pain and to cry?” It’s because I didn’t stop reading there and that’s where light was shined on my tears.

I then went through reading more doctor’s visits and evaluations because you know the first diagnosis isn’t where you stop. You have to hear it from many other specialists and doctors, not just for yourself but also for all of the others who continue to tell you that you are wrong, that the doctors are wrong and that he is just fine. So, we did all of that and funny enough every doctor came to the same diagnosis. Then after all of that I read the beginning evaluations from the different therapists and read his goals. I kept reading through the past three years all of these evaluations, these goals and also the new diagnoses that come along with your child on the spectrum. Because you know Autism alone just isn’t enough, there has to be other issues, like sensory processing disorder, ADHD, OCD, etc. You name it and you found out that your child not only has Autism but he has all of these other diagnoses too. Which are all common for children on the spectrum but you didn’t know that until your child was actually diagnosed on the spectrum. But, I continue to read and yes this took quite a few hours because Cam’s chart is huge, as I am sure all of you who have children on the spectrum can relate because you all have that same chart or charts. And through it I cried many, many tears. BUT at the end of it….when I was at my last page I closed it and realized just how far Cam has come in these almost three years. I realized how far we as a family have come because of Cam in these almost three years. He has achieved goals that I never thought were possible for him. He has achieved goals that doctors and therapists never thought he could achieve. He has changed people’s views on life with Autism and he has made people stop and smell the Autism roses. So through all of these battles or struggles with him, with doctors, with insurance companies, with schools, with family….he has still come so incredibly far. We have all come so incredibly far. Some days in the beginning I felt like the diagnosis was like a death sentence because the life that we had envisioned for not just Cam but for us as a family died that day. But it wasn’t a death sentence at all….it was a new beginning. We as a family are stronger than we ever could imagine, Cam is making amazing strides in areas we never thought possible and all of us are learning our life with Autism.

So, I say to you…take the time to read all of your child’s chart and give yourself a pat on the back. Without you, your child would not be as far as they are…without you, your child would still be where he or she was when they were first diagnosed. But, they’re not….they are making progress because of you. Give your child a pat on the back for helping you see life through different eyes and give them a pat on the back for making all of that progress. I know I went in and hugged Cam and told him how proud I was of him and how very much I loved him. Of course he had no idea why and probably thought I was crazy because I did all of this with huge tears in my eyes, but he needed to hear it…I needed to tell him. I think some days are so hard that we forget as Autism parents to look at how far we’ve come and how strong we are because we fight battles others could never imagine, we deal with things on a daily basis that most will never understand….yet we get back up and continue to fight, continue to do all of this and more. So please take the time to pat yourself on the back and tell yourself how amazingly strong you are and remember sometimes looking back with your incredible Autism child is ok because it reminds you how far you’ve come. 

"I'm Excited Now"

Yesterday was a day of relief and a day that I have lost sleep over for the past year and a half. I have stressed over Cam’s schooling and what to do for what feels like forever. I have asked different specialists millions of questions, talked about it to my husband, mom and friends over and over and over and over again. His teachers last year were wonderful and he loved them. But he still wasn’t getting all of the help he needs. He wasn’t being understood and I felt like I had to explain every situation to them when I feel like some of the situations should be understood and be able to be handled differently. From the beginning of him starting at this school I have worried that they wouldn’t truly understand him and his issues. I kept him there hoping that they would, worried about a change again for him and worried about upsetting others. After going through this for a year and a half and being sick about it, my husband and I decided it was time to make the change.

So, yesterday after having a few long talks with Cam about the change over the past couple of weeks I pulled the band-aid and transferred him to the school that is best for him. Of course it’s not a definite that it is the best choice but with all of my research and discussions it feels like the best choice for him. When he and his sister were sitting there yesterday while I filled out paperwork he had already started to talk to another little boy and though he may not see him again because the little boy is in a different grade, it showed me right there that we are moving in the right direction. When talking to the staff I already felt like it was a better change and then when leaving Cam said to me “mommy, I wasn’t happy at first when you told me about this place, but now I am very excited and can’t wait for school start.” You put all of those together and I left feeling like we had made the right decision.

For the first time in what truly feels like forever I am seeing the sun in the midst of this Autism life that has felt like we’re constantly living in a storm. I feel like Cam will finally get the help, accommodations, schooling that he needs and deserves. He is excited about it and that right there makes it feel like the right decision because he doesn’t get excited about change….at all. So the sun is shining, the hope is back and life is good right now. 

I Failed

I am not sure where to start….it has been a rollercoaster of a week with Cam. I took the kiddos on a trip this week and it started off great. Midweek it completely went downhill. We had to leave a place because Cam had a total meltdown and by total meltdown I mean dropping to the floor, kicking and screaming, crying, head spinning, total out of body experience to where I had to literally throw him over my shoulder and carry him out. All of this is going on while I am holding his sister’s hand while she is crying out of sadness that we’re leaving and because she was scared by his meltdown plus all of the people staring at me and instead of moving out of my way so I could get him out of there and to a quiet place they just stood there and stared. At one point I just wanted to scream “instead of kicking me…he will kick you if you don’t move!” We finally got to the car and just sat there….all three of us crying. I hate when I let myself cry when this happens, it’s a part of our life…it happens and it’s going to continue to happen, so why do I cry? After awhile the storm settles and all seems to be ok. Move forward with the day. A few hours later another huge meltdown happens and this time he is lashing out on me and I get hurt…nothing huge but a little blood was shed and then he starts flipping out even more screaming “I didn’t mean to hurt you mommy! I am so sorry mommy!” And this is when my 7 year olds becomes like a baby and sits in my lap in the fetal position just crying and hugging me very tightly. There is my sweet boy whom I know would never intentionally hurt me. He can’t control it, he can’t control himself and he wants to. You can see it in his eyes that he so badly wants to but he doesn’t know how. So, once again the storm calms down and we move forward. Not too shortly later we went to dinner and after dinner went to have dessert and you can insert third huge meltdown here. Once again Cam drops to floor screaming, crying, kicking and once again we have an out of body experience going on. I again carry him out of there kicking and screaming and again people just sit and stare. I guess I would stare too before my life with Autism. Now when I see this happen I just offer help or move away and try to give the “I completely understand and am sending you a hug” look. We get back to our hotel room, he cries and for the first time in awhile I just completely sob. I mean I have cried, but I was crying uncontrollably. Way to be a great mom and never let him see you cry! Yeah, I know….but three huge meltdowns in one day plus all of the stresses going on just got the best of me. Thank goodness after this one it was time for bed and off to bed he went. His sister hugging me and telling me how sorry she is that I am crying, which breaks my heart even more. My 4 year old shouldn’t see me cry and say these things. So I have not only failed Cam but I have also failed her. After he goes to bed I cry more and start trying to figure out why did today hit me so hard? This is not the worst day he has ever had and this won’t be the last bad day. I start going through everything and there’s a lot of things on my mind right now. Where will Cam go to school next year? Though after talking it through with my husband and a wonderful friend who knows the schools and the help Cam needs better than anyone, we have decided where he’ll be going…but that doesn’t mean I don’t stress that I am making the wrong choice. When can I get him into be evaluated for him hurting himself? (He pinches and picks at himself so bad he bleeds and he does this constantly all over his body) Am I giving him all he needs? Am I giving his sister all she needs? Why are family members attacking my husbands and my character when we have done nothing to them but love them and be there for them? What can I do tomorrow to make sure Cam has a better day? Why do I fail him and his sister every day? Why do I feel like my husband and I are on this journey all alone? Yes, I am beyond grateful we have each other because if I didn’t have him I would be locked up in a rubber room…but even we get lonely together on this journey. Needless to say I didn’t sleep at all this night. The next day was a much better day for all of us even with my complete lack of sleep. Fast-forward to today and it started out really good. We’re back home. He’s home with all of his toys, books, daddy and his puppy. He and his sister are playing great and it was just a wonderful day. Then bam tonight out of nowhere a complete and total meltdown happens after a small fight with his sister. All hell broke loose and it was like the perfect storm hit our house. Only this time I punished him because of one of the things he did. Yes, I know Autism is only a part of Cam and I can’t make excuses for his actions because of it….but some times I just don’t know what he actually has control over and am I punishing him for something that is completely out of control. I don’t ever allow him to use it as an excuse but as his mom I should know when it is the Autism happening or when it’s something else. But tonight I am sitting here questioning my decision. Plus once again I sit here wondering all of the same questions I wondered the other night plus a million more. Right now I am at a complete loss on so many things….but I have to believe the answers will start coming and things will turn around. More importantly I have to believe that tomorrow will be a better day….