A Day in the Life

I am sitting here ordering Dave’s graduation invitations today. I am beaming with pride that my son is able to graduate with a REAL diploma (and not an adjusted one). I’m so proud of how far he has come. Although he still has autism and all of the sucky things that go with it, he has made huge strides. It brings me back to when I went to see another doctor after Dave was diagnosed. And at the end of that meeting she said, “well there isn’t really anything that you can do. He will never play sports, he will never have friends, he will never marry and he may never speak. So good luck with all of that.” Ok, she didn’t say the last sentence but I felt like that was the gist of what she was trying to say. What uplifting news. Yay me. Screw her, I thought to myself. I am not the type of person who gives up. I was damned to try and do anything and everything I could to bring my son back from this shell of a person he was living in. But after that visit, I did start researching. And I was getting depressed the more I found out. One of the hardest things dealing with autism, especially back then, could be summed up in one word. Lack.

Lack of knowledge

Lack of a treatment plan

Lack of a roadmap

Lack of funding

Lack of insurance coverage

Lack of therapists

Lack of any idea what to do or where to turn

I remember thinking to myself, if Dave had been diagnosed with say, diabetes, the doctors would have told me, “this is what he has and this is what you do.” These are the steps you need to take. This is the medicine you have to give him. These are the forms to fill out for insurance to pay, etc. etc. etc. In almost any other disease or illness I could think of, they tell you what to do. And then people help show you how to pay for it. And the public is knowledgeable enough about it and they support you. NONE of this existed with autism. Not only did some doctors tell me that nothing could be done, insurance companies also said they covered nothing. And then worst of all, people would stare at me like I was a horrible mother when Dave would have meltdown in public. One of my coworkers even had the gall to look at my son and then look at me and say, “there is something wrong with him? He looks fine to me.” (Yes, I know, I wanted to slap him, but I didn’t). I can’t even explain to you the feeling of having something wrong with your child and then also having zero help, zero support and then actually being put DOWN by people. And I was depressed and I was exhausted and I had no idea what to do or who to turn to. In the beginning it was awful. Not only were you kicked in the gut being told something was wrong with your child but then every other way you turned, you got another slap in the face. I truly don’t know any other disease that beats you down like autism. I actually remember a friend of mine whose child had autism, and then was also diagnosed with cancer. She told me cancer was a cakewalk compared to autism. I was shocked at that statement but looking back now I see how that could be true.

I have been very fortunate in my journey. Although I have had to deal with all of the aforementioned ignorance and assholery (is that a word? If not, it should be), I have also been beyond blessed to have an amazing support system in my circle. My immediate family and friends have been incredibly supportive, generous and loving. But not all parents are dealt that hand. Not all parents are as fortunate. If there is ONE thing I would tell the public, it would be this. If you know of anyone who has a child with autism, reach out and bless them. You can bless them by praying for them. You can bless them by telling them you are thinking of them. You can bless them by saying these words, “I can’t imagine how you are doing this, but you are doing a GREAT job. You are a great Mom and xxx is so lucky to have you in his/her corner.” You cannot imagine how much validation means to parents of special needs kids. Don’t tell us that you don’t think what we are doing is working (yes, I actually had a ‘friend’ tell me that). Don’t tell us what we could do to help our child not melt down (yep, I’ve been given this advice also). Don’t tell us that your life with your typical, brilliant, speaking, potty trained child with their whole future in front of them is just like our child. Because they have nothing in common. Validate our feelings and frustrations and hurts and sorrows. That helps more than you could ever know.

The really hard thing about autism is that is never goes away. Every baby shower I am invited to brings back the hopes and dreams I had for my child. Every little league game reminds me that my boy will never play sports and that I will never watch him compete. Every birthday party reminds me that my son has no friends. Every wedding I go to reminds me that I will never have a mother/son dance with my boy because he will never marry. Every friend of mine now having grandbabies reminds me that my generational line stops with my son.

All of these memories I grieved when he was diagnosed. Yet all of ‘life’ reminds me of them everyday (which is why sometimes I just can’t bring myself to go to these celebrations of my friends, and I’m truly sorry about that but it is all so PTSD for me). I’m trying. But I also don’t want to be a downer. Who wants me at their baby shower when I have tears streaming down my face during the opening of gifts? I am trying to push past all of it but how do you do that when celebration after celebration happens and it’s just a huge reminder that my boy will never get to celebrate that. It’s a hard freaking life let me tell you. But how I get through it is to try and focus on the good things when they happen. I try to focus on how far Dave has come and how much he has progressed.

Graduation was yet another milestone I thought he’d never meet. Yet here I am, filling out graduation invites for my son and I am beaming. And I can’t stop the tears from falling down my face. I could not be prouder of who my son is and how far he has come. And I’m remembering that doctor who basically wanted to put my son in an institution then and there and thinking how wrong she was. Yes, maybe he will miss out on many things in life. But he will also surprise so many people in so many ways, and this, graduating with a REAL diploma is one of them. And so, for tonight, and for as long as I can before something else comes up that reminds me of what he is missing, I will choose to cry tears of joy and thankfulness for my child and the amazing person he is.