A Pitfall

Getting back into a routine can be difficult, for one with autism I can only imagine what J has been going through. Between the last day of school for winter break to starting back two weeks later, J’s world was a whirlwind of changes. So getting back to his regular routine, let’s just say it has been a challenge.

It took a full week after school started again for a solution to be found and even though it was short lived, I will give credit to where credit is due. This solution was Lance’s idea and it worked perfectly for 3 whole days. It was a full week of fussing, whining, maybe a little yelling, a tad bit crying, which ended up with me bribing, pushing and/or pulling J out the door in the mornings to the waiting bus. He was just not happy with the change from the two weeks off. Once J saw the bus aide, he would smile and get on the bus as usual. There was one questionable day that he wasn’t happy even getting on which led to me questioning myself and then his teacher, asking if she was seeing a change in him. Was there something going on that I wasn’t literally able to see, something he wasn’t able to tell me? Again, this is the WORST part about non-verbal autism.

The next morning was a week since school had started. J woke up on the wrong side of the bed, crabby and uncooperative. It was rough from the very start. By the time I got him downstairs for breakfast, I was ready for a drink! I called Lance in tears and ready to pull my hair out. Being the responsible one, he said it was to early to start drinking. My retort, party pooper! But he did suggest Maui, from the Disney movie Moana. J is transfixed by this movie and its songs. J and I proceeded to have breakfast, nice and quietly, and then it was time to get on the bus. I turned the Maui song on and it was night to day behavior from what we had been going through. J walked down the stairs, to the door, got his coat on and walked out the door to the bus without on tiny struggle, fuss, whine or groan. To say I was shocked was an understatement, I was blown away. We followed this routine for the next two days, using the song to help him get out of bed and ready for the day as well. It was a wonder.

Lance made a playlist of all the songs to movies that J is partial too and after a few demonstrations, J was asking to listen to his music via sign language instead of his movies. Never thought I’d see this. And this is how our weekend went.

However, not all good things last. By Monday morning, Maui and the Moana soundtrack weren’t working any more and I was back to square one with J. Wednesday was the worst as the bus aide had to physically help me get his coat on as he was fighting me every step. I was lucky I had even got him out the door. I found out that day he was also giving her trouble on the way to school that week. Similar behavior I was experiencing in the mornings with him. It is a terrible feeling to find out your child is behaving this way with/for other people. For him to act this way with us is one thing, we are his parents and will always work with him to teach him what behavior is appropriate. To have him act this way with others when we aren’t present, does give you a since of hopelessness. What are we doing so wrong at home that this is persisting for others to have to deal with. I called Lance right away to discuss and then emailed this teachers, as they are wonderful educators and a great support system for us. Then of course I called my mom, my personally appointed support staff.

One Day At A Time.

Thursday I got him to the potty, dressed, teeth brushed & downstairs, minimal issues. Eating breakfast and cleaned up, no issues. His teacher had sent home a picture schedule for this morning routine (we already use one for brushing teeth and hand washing), I folded it up so it focused only on the ‘get on coat’, ‘van’ and ‘school’ pictures and told him 3 times what I was expecting him to do. It worked. I brought his coat to him instead of waiting till we got to the door, let him grab his Dory book and I grabbed his Marlin and Dory bath toys to use as a distraction when needed. We did go out a little too early for the bus so he thought we could go for a walk, that caused a little trouble, my fault (the neighbors got a show on that one), but he did get on the bus okay and the next day we did it all over again with even a little more success.

His teachers are supporting us with brain storming how to get him to enjoy the bus again and will be having a teacher ride home next week to assess his behavior for ideas that could help. His bus aide thought getting bobble heads back on the dashboard would help (which she had for the last 3 months with the holidays and thought this change might be causing the issues), so there are three little Valentine figures for him to look at. My mom calls me when she can to check on how it’s going, if anyone knows how hard it is she does (35 years and counting working with special needs children). Lance is calling me after J has left on the bus, to make sure we both survived another morning and give me his support. I in turn call in the afternoons to see “how are my boys doing?”

I know it may sound cliché but Lance and I are so lucky to have one another. As I started to fall apart with this phase of J, I had him to lean on (and my mom when I couldn’t get through to him cause of this thing called work).  It’s not an easy journey, raising children in general, but definitely not when they are autistic. Our relationship has experienced some rather large pitfalls and been tested more than once by the unique challenges we have to face but we have held onto each other even when we are at our worst. Having a partner in this journey is something I’m so grateful for. We are able to ground each other, hold each other accountable, support one another and most importantly love each other, with all our flaws included. Communication is vital and it is ever evolving, as we continue to learn about each other and grow together not just for ourselves but also for J. After each troubling phase we go though in which I’m starting to fall, Lance has this wonderful way of reminding me how much he loves me, how perfect J is and that we are going to have a great life.

Tomorrow’s Monday, One Day At A Time. Wish me luck!7546221f8df33e6f1fa7ded6231723a8

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New Year Resolutions

Since J has been diagnosed with ASD, I’ve always made yearly resolutions aka goals for him. Like this year…he’ll be talking by his birthday, he’ll be potty trained, he’ll be seeking out social interactions with peers or he’ll be able to dress & undress himself. Here we are fours later and we have met none of these…completely. He is communicating with us, more and more, realizing that using his words helps him get what he wants. He is sitting for us better when we take him to the potty, but he has yet to initiate before wetting his pull-up. With the help of his teachers he is interacting with his classroom friends at school; sitting with them during calendar time even participating, playing catch with a ball during PE and enjoying a game of tag during recess. And though he isn’t able to dress or undress himself, he helps and that alone helps us big time.

Sometimes I think about how sad it is that we haven’t met any of these goals but then again, I’m not! We have come to cherish all his successes, however big or small. He has improved so much over the years, especially in the past four months since starting kindergarten. I’ve said it before and I’ll say it again, we are definitely on a roller-coaster ride with J. We have days, weeks that he is all smiles, love and can easily be persuaded to do his therapy work. Then we have several days that he consistently whines and complains about anything and we can’t seem to figure out what is going on. This is absolutely the worst part about non-verbal ASD.

img_2665I’ve decided this year though, I’m not making any of these resolutions/goals. My goal (which I’ve talked about in prior posts) is to continue to take ‘One Day At A Time’. Enjoy the good days and regroup/rethink to make the bad days better for when they come again, for they will. It’s good to have long term goals but not to the point that they cloud my perspective on all the little goals J has achieved. Like…drinking from a cup independently, learning his name and how to write it with an emphasis on the letter J, showing interest in reading, sleeping regularly, trying new foods (shocker) and walking on the stairs by himself (with a watchful eye).

#ODAAT – ‘One Day At A Time’ because who wants to rush life. b34249ae6221f3d98d1755eaf0de4a7c