Things I wish I knew about Autism…

When I think back to when J was first diagnosed twelve years ago there is so much I wish I could tell my younger self. Little things that would have put our relationship on the right path for trust, respect, and encouragement, a place we have finally made our way to after much trial and error. Love was and still is always there, but children need so much more than love from a parent. They need guidance, support, structure, kindness, fairness, discipline, an empathetic ear and  to have it all delivered with a healthy amount of patience.

On this page I will share some life lessons I’ve learned through my adventures in Autism. I hope this page helps and guides you past some of the hurdles and challenges of parenting a child with Autism . Enjoy!

-JRED

Entry 1

I had my son early in life and although I had a natural knack for connecting with children, I just did not have the tools to deal with what lie ahead. Autism challenged every approach to parenting I thought I would have as a tool. This became very apparent around the time J turned three.

I couldn’t reason with J when he was having a meltdown nor intimidate him to stop with sternness or the threat of a spanking. It was so frustrating, watching my boy scream and cry until blood vessels broke under his skin, giving the appearance of red freckles. I would try everything, or at least what seemed like everything to me, holding him, soothing him, restraining him with a bear hug in the hopes it would tire him out and keep him from hurting himself, singing to him, bribing him and a ton of other things that were temporary fixes.  I had never dealt with a child I couldn’t calm. It broke my heart, I felt pain that there was no comfort for, I felt helpless and overwhelmed and since I was alone with him most of the time I would dwell on it and crumble. I was not acquainted with feeling this powerless and my sadness quickly turned to frustration, resentment, and anger. How could my little boy want to cause me so much pain, worry and grief? I was only trying to do right by him, care for him, love him, guide him, and he was making my life so difficult. Why did this happen to me, what did I ever do to deserve this? I didn’t want to be a parent that spanked but it seemed he was leaving me no choice. Well, spankings did not work either, in fact they made things drastically worse.

Here’s What I Did Wrong- Beside spanking, yelling and losing my temper, I made it all about me, what I was feeling, how this was all affecting me, how my life wasn’t what I wanted it to be. I was still young minded, selfish and self involved. I had not yet learned the sacrifice and selflessness that unconditional love demands. My son had no one else but me to help him and I was falling apart right before his eyes. I wasted too much time dwelling on  my situation, that I missed opportunities to gain control of things. I let my frustration and anger create hopelessness and distance between us. That’s not to say I didn’t love him, I smothered him with love, but there was no connection, not like there is now. Yes what I was going through was not fair, and it was a lot to process at twenty-two along with being a new parent and all the other things going on in my life, a failing relationship with J’s father, moving back in with my parents, and a blossoming career put on hold.

What I Would Do Different-

• The first thing I would tell young JRED to do, stop dwelling, at least while she is in front of J. It’s very counter productive at a time when our attention should be on teaching J through play. We should be observing and trying to understand him, what sets him off, how to avoid or limit this. Children believe we are super heroes and at some point in life they may realize we are not, but hopefully that’s at a point in their lives where they are confident and educated enough to understand why. We have to give them the feeling that life is safe and stable and like we can keep them protected even if it is an illusion we are creating for them. That illusion is a gift, almost like taking them to Disney World. You know it’s not realistic but you want them to believe in magic, to be a child. The reality of life will naturally find them, no need to bombard their childhood with adult concerns they do not have the capacity to understand.
• I would tell her to focus on letter sounds and words with J. Simplify the reading material so that he can mimic sounds and words. Work with flash cards and teach through play, tickling, and games. Don’t yell just correct patiently, simply, without visible frustration. Show pride painted across our face when he does good. Minimize the reaction when he does wrong.
• I would tell her to deal with her feelings in a healthy manner, away from J. She is in mourning, mourning the loss of an ideal that she created in her mind long before J was even born. Those feelings definitely need to be addressed to make sense of them or at least get them under control.
• I would tell her to talk to people she trusted after J was asleep or away from the conversation. I would tell her to seek out professionals and other parents who have gone through this that can shed some light and much needed advice.
• I would tell her to exercise and make time for herself to clear her mind even if it was just an hour a day to blow off some steam so it wouldn’t be taken out on J.
• I would tell her to write, keep a journal and write anything she felt, poems, diary entries, songs, drawings, anything that helped her process her feelings to the point of some clarity.
• I would tell her to have faith, and be strong, and to pray. To see this as an opportunity, to find the purpose in the detour life put her on, and if she can’t find the purpose, create one.
• I would tell her to cherish this time, Autism or not J will never be this small again. Enjoy watching him discover the world even if it’s not at a pace society expects a child his age to be, go with it, follow his lead and be a witness to his life.
• Lastly I would tell her to let go of what she thinks her life should look like to please others or because of what she was taught. I would tell her to let go of the shame of returning to her parents house for help and appreciate the fact that she even has that option. I would tell her not to worry about being a single mom for fear of what others would think of her or her child, a happy single mother is healthier and stronger than a miserable married one. I would tell her not to worry about her career and money, they are not going anywhere but J’s childhood is. I would tell her not to worry about making everyone happy. I would tell her that she can not control others and how they feel only herself, that she is the only person responsible for her happiness, not a man, nor society.

Then  I would hug her hard and tell her she will get through this, people have gone through worse.

-JRED