Unless….

….you are a parent of a child with autism, you don’t know how helpless you feel when you can’t reach them. You don’t know how it breaks your heart to see them withdraw into their world. How badly you want to help them, understand them and you can’t reach them.

I thank God daily for us finding the Son-rise program. It has been life-changing for my family. My boys have made so much progress. If anyone has any doubt that children with autism can recover, all they need to do is visit my home and see my boys, and hear my stories of where they came from.

Thankfully, we have way fever instances where I feel that helpless feeling. Because of Son-rise, and our playroom, I know how to connect with my sons. At the same time, the instances where they know what they want, and me not being able to either understand them, or for some reason not being able to get what they want, are emotionally harder for me to deal with. Because they know what they want, and they know they are able to communicate to me, but they get frustrated when I don’t understand.

Tonight for instance: we came home, and it was after 8:00, so I told the boys it was time to get ready for bed. Terrence asked for his ABC jammies. Now, it is not an unusual occurrence for them to request what jammies they want to wear. Actually for all of their clothes, they’ve become quite opinionated. However, I have NO IDEA what ABC jammies are. They have Elmo jammies (that are 2 years old, and the pants are like capri’s and the shirt is a belly shirt, but they still love them!), they have fire truck jammies, ball jammies, dinosaur jammies, cars jammies….. But no ABC jammies. Terrence was adamant. He was even so good about using his words. He’d tell me he want his ABC jammies, and I’d tell him he doesn’t have them. So he said “ABC jammies, go find it, in the garage” (that’s where the laundry is). “Go find it in the dresser”. I even had him go and see if he saw what he was thinking about, but he didn’t.

I felt so bad because he knew exactly what he was thinking of, but I just have no idea what he means by ABC jammies. So I found the ball jammies, which are one of his favorites. He didn’t want those. I offered him just a t-shirt to sleep in. He didn’t want that. By this time, he’s in a full meltdown. After about 15 minutes I started feeling sorry for myself. “This is the type of behavior that it seems like I am the only one blessed to be able to experience….”  “It’s not fair….” blah blah blah……

I decided to try to just dress him in his ball jammies. I don’t like forcing him to do things, the whole control issue… but I knew how tired he was, and we weren’t getting anywhere. I was barely able to get him undressed, and there was no way I was going to be able to dress him. So I just put him up on his bed, and tried to tuck him in. Obviously he didn’t like that, and kept crying. So I went on tucking Tyrell in, and went to try to talk to Terrence.

He was sitting on his bed, crying, and when I actually took the time to look at his face, I knew he wasn’t “there”. He had withdrawn into his autistic world. He was doing the best he could to cope. I felt so helpless. Looking into his eyes, I could practically see him in there, lost, just needing a connection. I asked him if he wanted a hug, and he yelled “No!” The thought flashed in my mind that if I needed to, I’d take him to the playroom. We can always connect in there, and I didn’t want him going to bed crying like this. I tried again, saying “Terrence, want mommy holdy you?” That’s the phrase I always use when they’re upset, and they say the same thing when they want to be held. I honestly didn’t think he’d respond, but he held out his arms to me.

I took him and sat on the floor and wrapped a blanket around him. I am grateful, so much, for the Son-rise program, and the tools it has given me to reach my boys. But still, I have those moments of feeling absolutely helpless. With knowing what they can accomplish, and seeing how incredibly far they have come, but still seeing the struggles they have. My heart broke as I sat there rocking my sweet Terrence.

I was telling Terrence how much I loved him and had started to cry over the emotions I felt, when he said “I go to bed”. And I knew I had my Terrence back. That quickly he was able to connect with me again. I asked hesitantly “Do you want your ball jammies?” He said “Sure!” Then got up and asked to go potty.

Before the Son-rise program, my helpless feelings would have quickly been shown as frustration and irritation towards their meltdowns. I didn’t know how else to deal with them. He would have felt my frustration, and my un-acceptance of what was happening, and it would have been a downward spiral from there. Even though tonight I had started feeling sorry for myself, I tried my best to respond calmly and without frustration. I think that is why Terrence was able to connect with me so quickly after that.

I got him into his jammies, tucked in and prayed for, and he went to sleep calmly and happy. I left their room with the thought of this post on my heart, and just had to write it. I am so so so thankful that I have met so many wonderful mommies and daddies with children on the autism spectrum. Who know the gut-wrenching helpless feeling, wanting to help our children, feeling a love for them so strong you can hardly speak. Because there is just something comforting about knowing that other parents can truly know how I feel.  I thank God that He gave me these tools through the Son-rise program so I can reach my boys. It feels like the feeling you’d have when you are stranded in the ocean and someone throws you a life raft.

Farmer Terrence

Me and my sweet Terrence-do

This picture is 2 years old, but still one of my favorites of Terrence.

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