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.


10 thoughts on “2015

  1. wow very well written and Ashley you are a mom and it hurts us to do anything we know our child is not comfortable with, you did what you knew had to be done . I am sure when he settles in to the school routine he will do wonderful . it just like any child they are not happy wih change. what school will he be attending? I am always there for you and Jeff if ever you need it. 💓💞💓

  2. Ashley, you have exposed your heart in this post. I am so sorry orientation didn’t go well. Prayers for a successful school career that will begin in September.

  3. Oh Ash!
    You are one of the greatest moms! Of course that means all the awesome things you do, but you cry and you get frustrated as well because you just want the best for Ledger; we all do! Don’t feel guilty for that (haha, so much easier said than done). Ledger will make the transition, and this time next year you will feel so much better about the situation. I’m sure it won’t always be pretty, but I’m confident once the teachers and kids know him, and he starts to know them, they will be excited to see each other everyday and you won’t have to worry so much :). Xo

  4. Ashley, I’m so sorry that orientation did go as you would have like. I understand how sad that can be. Just remember that they will get to know the true Ledger. He will have good days and bad days, and everyone at the school will love and comfort him through them all. He will be ok ❤

  5. Well Ashley I knew He had a rough day when he went to orientation but reading about it brought many tears. Just remember that we are all here for you and we always will be. We pray that he will find something special that interests him when he starts school and when he does he will rock it!

    Love Mom

  6. Aw Ash!! I’m sorry it didn’t go well. I was thinking of you guys that day while watching Michael having a hard time sitting still and listening and was thinking how hard it must be for Ledger as he doesn’t understand what’s going on or why he’s there. I wish there was more we could do to help you guys through these transitions. Ledger is lucky to have such amazing caring parents. I hope he adjusts to the new school routine in September and we get to see that sweet smiling face while he’s on his new adventure!!! ❤️

  7. Dear Ashley, When I saw you the other night at the Casino night, I am amazed not only by your beauty but your grace. What you are enduring with beautiful Ledger, no Mom should have to go through. He is a beautiful child and I just know God gave him to you because he knows Ledger will be loved and nurtured the way he should be. A friend of mine often tells me that while I am coping she is caring. Well, while you are coping many many people are caring. Love Jane

  8. Ashley, I’m simply amazed at the strength, courage and grace that you exude when faced with such challenges! You are an amazing woman and mother and you should be so proud of who you are and what you accomplish everyday with Ledger! Your expression of both your moments of strength and weakness are truly inspirational. ❤️

  9. Oh Ash, I’m so sorry to hear that it was such a rough time. Being a mom is hard enough without any extra challenges. You’re a wonderful mother and I admire your strength. Ledger is such a lucky little boy to have you.

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