Five Things You Can Do Right Now to Survive Your Child’s Autism or (ASD) Diagnosis

I remember when I first heard the doctor tell me my child had Autism. These days, children are given a diagnosis, usually, of “Autistic Spectrum Disorder” (ASD). My son is 15 now, and back then the diagnosis was simply Autism.  When I entered her office I thought I was prepared; I had already looked up all the symptoms so I figured “I knew” the diagnosis. But it was probably more devastating coming out of her mouth than it was in my brain. I knew there was no time to worry about what I was feeling and that I had to start getting things done. I felt like the clock was ticking and every moment I wasn’t engaging my son in therapy was a moment lost to the void, a moment that I would never get back. The race was on. I used every resource to help him, but I had a lot of internal struggles and suffered a great deal. I wish someone could have helped me with those early private battles. Recently, I have thought a lot about those early days and wanted to share some things with you that might be helpful as you care for your child, your family and yourself. I hope this helps you unhook yourself from some of your struggles.

1. Tell the fortune teller to go away. One of the things I think many parents struggle with is the voice in their head that tells them there are only terrible things in the future for their child. We hear the diagnosis and our mind goes to the worst case scenario. Since we cannot predict the future it is best to stay in the present. It is a spectrum disorder and every child is different. We cannot predict the future and if we are worried about the future we miss great opportunities to enjoy the present. Also, if you are in the present moment you get the chance to make choices about creating the kind of future you want for your child. So when your mind wanders to scary places, come back to your goal for the day for your child and think about something you can do right now to meet that goal.
2. You don’t have to do everything today. I think one of my biggest fears was to try to get it all done today, to teach my son as many things as possible, as quickly as possible. I felt if I wasn’t doing everything, then I wasn’t doing anything. You are enough and you are doing all you can. You have two hands and only so many hours in a day. Also, we all need time to absorb what we are learning. Both you and your child are on a journey to learn as much as possible about this disorder and to try to create improvement. Downtime for both of you and for your family is important and will help you all process what you have learned. Don’t discount the time you need to just step away from therapy for a little while. Sometimes there is magic that happens for your child outside of therapy sessions. It is ok for your child to just be a child for a little while.
3. Give the “shoulds” a rest. I think I spent many nights lying in bed thinking of all the things I “should have” done that day. It only made me feel like a bad and guilty mommy by the end of the day. It was unproductive and demoralizing. I can guarantee you that you did your best today. If you are like me you have read about the kids that “get cured” and wonder “why not my kid?” Well, like I mention it is a spectrum disorder and we don’t know where our kids will end up on the spectrum, even after years of therapy. When my son was 2 years old he had a 40 hour, 7 day a week therapy schedule. That doesn’t include OT, PT and speech. He was the hardest working two year old ever! He is still non-verbal and on the severe end of the spectrum. I did everything in my power to help him. The fact that he is limited doesn’t mean there is anything I should have done better. Don’t get me wrong. It took me a long time to come to peace with that and that is why I offer it here for you to consider because I don’t want to see you struggle and that leads me to…
4. Stop blaming yourself and each other. I wish I could reach right out to you and hold your hand when I tell you this, but this is not your fault. It is not your spouse’s fault. I struggled a lot with this. I replayed everything I did in my mind over and over again. I wondered, “what did I do when I was pregnant that could have caused this?” He actually had a few words and regressed, so I really put myself through the mill trying to figure out what I might have done when he was a baby that caused this. The fact of the matter is, at this time, we don’t know what causes autism. Also, I would like to add this…what if we did know what caused it? What if indeed someone could point to a particular behavior or event that caused it? Would that knowledge be helpful? It might be helpful if it was something that could be fixed. But if knowing what caused autism couldn’t fix it, then how helpful would it be to know? Blaming myself doesn’t bring me closer to my goal of giving my son the best life possible. The lesson I learned was to use the energy I was using to blame myself for more positive things in my life.
5. It’s ok to grieve. I will never forget when I read something to the effect that a part of you will grieve for the child you thought you were going to have. I thought that was utterly selfish and I wanted no part of that. I loved my child with my whole being. What did I have to grieve? Parents had lost their babies and mine was right here. I was lucky and should feel lucky. Funny thing was I didn’t feel lucky at all. I felt angry. I broke down in the bathrooms at other children’s birthday parties when they blew out their candles. I broke down in the hallways at graduations and weddings. I would imagine all the things he would never experience in his life. I finally had to admit, my child would not get the chance to experience those things and that I needed to grieve not the child, but the image of childhood I had for him. I think when I realized I was not grieving the child but my perception of what it was supposed to like, I was able to move on. Over the years when I feel that tug in my heart of what I don’t get to experience as his mom I shift on what I do get. I get the opportunity to show him unconditional love. I get the opportunity to be present and live in the moment. I get to be part of his incredible life and watch him teach people lessons they never expected.

There are so many more things to say about this topic. As a mom who has been there, I know what it is like to wear your heart on your sleeve. You may have a long road ahead of you, but it doesn’t have to be one of suffering. There is much joy there, too.