We usually start our day anywhere between 4:30-5:30. This morning it was 5:30. Ledger was awake and he had gone into our closet to hang out. He likes it in there. He looks in the mirror and sits on a bunch of overnight bags that somehow give him some comfort. This morning though, he climbed into bed with me and was cold. His hands especially. And he smelled like raspberries. He had gone into the fridge, took a yogurt (yes he’s allergic to milk, and no it wasn’t a dairy free brand) and ate it with his fingers. We quickly got some Benadryl into him and gave him a shower. No hives, no itching, no throwing up. A few months back he had gotten into some peanut butter ice cream and did all of the above. Its my day off so I kept him home from intervention this morning just incase he had a delayed reaction. So far, he seems great and is jumping on the couch while watching Toupie and Binoo (his fav cartoon right now!). He loves jumping – we even have our couch cushions duct taped where he has worn them out! Check it out – how can’t you smile?
I’ve been trying to write this blog for two weeks now. It’s not a fun one, and more than once I have given up and walked away from it. Today I read a post from Autism Daddy – a blog I follow and it made me get my butt in gear. Check him out when you get a chance: autism daddy His son seems a lot like Ledger, and he posts a lot that we can relate to. I’m always saying to my husband “listen to this!” because he seems so comparable to Ledger. I’m guilty of what he’s saying today though. So many stories on autism are always happy or heroic or successful individuals. But that’s not the only side to the disorder. I do try to lighten the situation because I try to be a positive person and see the best in each day and situation, even though sometimes that seems like an impossible task. Often after I read feedback from you, I feel like I’ve softened the story to make it seem like we are calm and very manageable. That’s not always the case.
Today I’m jumping in with two feet. Kindergarten orientation. Not so manageable. And the farthest thing from calm. We tried this last year and we were actually more successful then than we were this year. Ledger was very agitated as soon as we arrived. He didn’t want to sit down. He didn’t want to wait for the activities to begin. And he didn’t want to be in a new gymnasium full of new people. I tried to get him to sit beside me. This only resulted in screaming and throwing himself on the floor. I tried to get him to sit on my knee, which resulted in flapping out his frustrations – directly on my face. Yes we had visuals. Yes we had fidgets. No, he was not cooperating. Did I mention this was before they even asked him to do anything?
We quickly escaped the gymnasium, Ledger screaming, and me, shamefully wiping tears from my face. Jeff was trying to help him walk out his feelings. His ASW was trying to show him some visuals and I was trying to get it together. A kind teacher at the school showed us the sensory room and told us to take as much time as we needed. So sweet of her! Ledger did seem to decompress. However, he was not working up the courage to go back into the gym. Again with visuals, lots of prompting, screaming and even more tears from mama, we got little bits of time in the gym followed by longer periods of time in the sensory room. We did this for about 45 minutes and decided that was enough. I didn’t want to put him through anymore and to be honest I couldn’t get it together myself so I needed to get out too.
New things are hard for Ledger, and for us. If it’s hard on him, it’s hard on us. I hate seeing him get to the point that he needs to slap his hands against something to get out his frustrations. He didn’t hurt me physically but he crushed me emotionally and mentally because I couldn’t help him. I couldn’t explain to him what was happening and he couldn’t understand why he was there. The teachers were very kind and did not push him in any way. They gave us the space we needed and were very understanding when we left early. I’m sure their eyes were opened and so were some of the other parents and children in the room as well. It’s awesome that they have a sensory room that is already set up so that if he needs a break he can go. But it’s still hard as a parent to mentally wrap your head around the fact that he’ll be there in a small secluded room while his classmates will be learning new skills and building new friendships. I know, that’s probably making me sound pretty selfish to think that right?
It doesn’t matter that we’ve been living with this for 3.5 years already… it’s not getting easier. I’m a mom…and just like any other mom, when you see your child is uncomfortable, unhappy or just very frustrated with something, you are going to share those feelings. The difference is, you may be able to communicate with your child and calm them down with reassurance. We don’t have that luxury with our boy. I’m very scared for next year. More scared than I was with the initial diagnosis. Because I don’t know how he’ll react. And it’s the unknown that’s so scary. I pray and I know that the teachers will be professional and accept him just like they do with all children. I pray that he will become comfortable in that new environment and that he will be treated with respect from his teachers, workers, and classmates. I pray that they will meet the sweet side of him that we often (but not always) get to see at home. But most of all I pray that he will smile, which he didn’t do at his orientation.