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.


Not your typical post

So, I’ve held back a few days on writing this post for several reasons…one being that the boys have been super busy and keeping me on my toes, but mainly because I wanted to allow myself to cool down before I used words that I might wish I hadn’t.
This is not the typical post that I have been writing. As I’ve mentioned before, I try to capture fun and happy memories, although I have also shared a few of the frustrating days. But it’s not the autism per say that I am frustrated with this time. On Wednesday, I got a call from Ledgers case manager. I often do, just as a “checking in” call to see how things are going. This call started the same way. I told her we go day to day and we’re managing and getting by. She asked about our opinion on his progress and I told her that we have seen very little in the past few months. To be honest I feel as if we may be regressing. She agreed with me and said that since they have lost their OT services, they can’t seem to get much out of him. Here is the kicker. She then proceeded to ask me if I had specific suggestions or tasks to work on because they (that’s right, the professionals!) were running out of ideas for him. I very calmly, asked her if she could speak to the director about cases that they have had with similar clients to our boy. We ended the conversation at that, and in good terms.
Since hanging up, I have been building and busting with feelings of anxiety and frustration. I realize that he is on the low functioning high needs end of the spectrum, but this conversation made me feel as if they have exhausted their sources and have nothing left to offer our son. If anything he has some of the greatest needs and they don’t know what to do. This is not a new service and I find it hard to believe that in the years they have been operating that they have never encountered a child like ours.
Since our conversation just two days ago I left left a voice message and an email for the director to contact me but have not heard back; I spent over an hour at our community autism centre trying to find out if there were other options to help our son but there isn’t in our city; I called a psychologist in a near by town who we’ve been waiting to see and got an appointment for September; contacted a new speech department and waiting for a call back from them; and lastly, I started researching services in Alberta, and reaching out to families who have packed up and done the same.
It breaks my heart to think that the only service available for Ledger is running out of ideas on how to help him. I don’t want to leave, but if the only service here has done what they can with him, then do I have any other option? If it means helping our sweet boy and giving him a better future, I’ll start packing tonight…