"The beauty of the past is that it is the past. The beauty of the now is to know it. The beauty of the future is to see where one is going." ~Author Unknown
Earlier this year I was heading out to the bus stop to get P on the bus. As he boarded the bus and said, "Adios Mom" I waved and walked over to where my 2nd grader boarded his bus. I was approached by a neighbor who said,
"Why does your son ride that bus? How old is he?"
I told her he was four years old and he rode that bus because he had Autism Spectrum Disorder.
She began asking me questions and telling me about her son who is four as well and said that her doctor had recently suggested that he be tested for Autism. She asked me if I had ever heard of the Autism Community Network.
I think I may have responded with more excitement than I perhaps should have. Heard of it?! Omigosh! They saved my life! Before I had gone out to Autism Community Network, I felt like I had little or no connection with my son. I was constantly playing this game as he was growing up. I had asked the doctors about Autism when he was 4-6 months old because he had some "odd" behaviors at the time. I had been told that even if he did have Autism it was too early to tell and I was sent on my way. For the next 2 years I would go back and forth with myself, "Something is off- but he's so smart" . I remember telling my friends, "I don't know what is going on with him, something isn't 'right' but whatever it is I don't think it's severe." It was like a constant internal battle with myself. How many of you can relate to that?
Then when he was 2 I tried to go back to work. I put him in daycare. For the first 3 days he loved it- I remember crying the first day I dropped him off he just waved at me and was like "BYE MOM!" (of course no actual words used) He was excited to stay and play in this new place and really could care less that I was leaving. Then by day 4 if he was in the car when we even turned the direction of the preschool he would start crying. He would cry for so long. At first I thought it was the school. I didn't understand how he had enjoyed the first few days and then all of a sudden out of the blue he was having a major fit. I was convinced he must have had something "bad" happen to him there. I moved him to a preschool that I knew I could trust, where my oldest son had previously attended. It was fun seeing all of my son's old teachers, they all commented how he looked just like my oldest son, but in a few days they all realized how different he was as well.
y day 5 at the new preschool he was becoming destructive. I was getting called out of work every day- I was actually paying to work since the daycare charges you regardless. The last day I took him there- I thought he just needed to get used to it- that he was just going through some sort of separation anxiety. However, that day? He sat in a corner for the full 8 hours I left him there, never stopped crying, never ate, and never even wet his diaper. When I picked him up he wouldn't look at me, he did nothing to interact with me at ALL, and while he wasn't that interactive anyhow, I knew this was just NOT RIGHT. I cried my whole way home looking at him in my rear view mirror and thinking, "WHAT IS GOING ON!" Before I reached home I called the pediatrician. I made an appointment. What was I going to tell her? I had no clue. I felt like I was being a wuss and just didn't know how to be a mom anymore. "Yes Doctor, I can't control my child, he has major outbursts, he won't stay in preschool, he hardly talks, clearly I am failing as a parent." Yeah, I didn't look forward to it but the next day we headed out to the doctor.
I remember I was shaking, when we went into the office I took my son in without using a stroller, I mean he was after all 2 years old. He was absolutely uncontrollable. People were staring at me and I knew they were thinking exactly the same thing I was, "What a lousy Parent". One woman who was there with her (what I assume) grandchild kept giving me the "evil eye" and I wanted so badly to say something to her- like, "YEAH! I KNOW I KNOW! ...But I really DON'T KNOW" All I wanted was a reason all this madness was occurring. Why was I failing so miserably when my oldest son had been such an angel in my eyes! I came to the conclusion CLEARLY I just couldn't handle two children, this was somehow ALL My fault.
We finally made it back to the doctor's room and I almost immediately burst into tears. She listened, she asked me some questions and then she told me, "I think he needs to be tested for Autism."
While it wasn't what I WANTED to hear, it at least gave me something to research, and I had some sort of answer that at least made me feel that this is not MY FAULT! I was informed it would take up to 6 months to get a Diagnostic Evaluation, and in the meantime I was supposed to start him in some Speech Therapy. I jumped on everything, I started doing research, I started realizing that my child really exhibited these signs. I read a lot, but I met essentially no one who understood, no one who could get it- little did I know I was looking in all the wrong places. I felt so alone as I waited for the test date. My husband and I were at each other's throats, he was in complete denial leaving me to carry all the burden (or at least that is how I felt).
For the next 6 months I did whatever I could, I educated myself, I listened, I asked a lot of questions. P started making some progress in speech but we were still having meltdowns on a regular basis. Finally our day came. Even though I was convinced that my child had Autism, hearing the words come from a group of doctors was still not easy. I thought I had prepared myself well, but the truth is no matter what? You really can't prepare yourself for something like this. Hearing the words made it REAL. OH MY GOSH! I am going to be living with this for the rest of my life! Will he ever have friends? Will he ever speak? Will he ever potty train? Will he ever be able to live on his own? Will he ever be able to learn? ? And.... worst of all, Will I ever connect with him, will he ever know how much I love him, will he ever love me?
Good news is that YES YES AND YES! He would do all of these things (well I'm still holding out hope for the potty training but we are definitely a work in progress over here). P's recent prognosis, and it will be two years this August since our initial evaluation, is that if he continues progressing at the rate he is, he has a very high likelihood of becoming a fully functioning adult. I am so thankful that the Autism Community Network was able to give me the tools to learn how to not only LIVE with Autism, but THRIVE while doing so.
Today that neighbor who came to me and questioned me months ago is going to HER test day. I can only hope that she will end up getting the answers that will hopefully give her the help that she needs. It's been so long since I was in that position. Sometimes I think that life just moves so quickly, and we are so busy living in the now we forget what it was like in the past. I am always saying, "Man P is doing GREAT!" but I don't think I often truly realize how far we have come.
Since his diagnosis I have been accused of glorifying Autism. My neighbor has made me realize that, yes, I think I do that as well and It would do me some good to remember how I felt two years ago, alone, isolated, confused, scared, nervous. I don't think ANYONE could have ever convinced me at that moment that Autism was going to be a "good" thing in my life. And although days are hard, I often don't even realize how behind P is. I don't even realize the things he CAN'T do because I am so busy focusing on what he CAN do- and the fact that 2 years ago he was completely non-verbal. He was having a fit every day, he was becoming violent and I literally cried all the time wondering how in the world I was ever going to live with something like this. Yet here I sit, and although it's not enjoyable every day, and some days are harder than others, things have changed. I often realize that it's not my child that makes it HARD though- it's the lack of awareness, the lack of understanding and the inability to find people who "get it". The truth in my case however is that Autism has given my life a very passionate purpose. I am a HUGE Advocate, I am always wanting to help other parents, I am always wanting to do something to give back to the community. Bring us all together, and eliminate the feelings of loneliness. And every day my son inspires me to help people realize how Autism can be an AMAZING thing despite all the trials we may endure on our journey. Autism = Bittersweet.
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