Tag Archives: change


Change is hard. It usually involves having to do something differently than you have been accustomed to; like trying to eat healthy after a long holiday season filled with gluttony.

For most people on the spectrum, change can be quite difficult.  I used to think it was my son’s kryptonite. But, as he’s matured, and with proper prompting he has done better with new situations. Even last minute surprises are not as problematic as when he was a toddler and we were first figuring out how to deal with his outbursts.

Now, instead of lashing out at unexpected variations in his day, I see him turning internally and spending more time alone. I think this is a typical pre-teen reaction to transformations. And I think it’s good he is trying to process. Yet, I recall Jenna dealing with “teenage things” and asking me questions or turning to her social circle to figure out the world. Ryan doesn’t do this. He doesn’t ask me the types of questions Jenna did, like: “Why won’t she talk to me, I don’t know what I did wrong?” Or: “Why did she move away, she was my best friend?”

Ryan is more a big picture guy. The things that affect how he moves through his day matter most. Like, losing his therapist that had been with him since he was four. Nothing bad happened to her (thankfully), she just moved on to a new job. But this change is big. I would consider it big for anyone who had worked side by side with someone for eight years, but for Ryan is could potentially be catastrophic. His whole apple cart could turn over. Luckily she coordinated her departure to coincide with the holiday break from school; so he had a good transition period. And we prompted him like crazy that she wouldn’t be there when he went back.

Not to say he didn’t grieve for the loss of her, but he didn’t ever ask me why she left or inquire when she would come back, like Jenna may have asked. Maybe I didn’t give him the chance because I was so afraid of what the change would do to him that I kept talking about it. Maybe he didn’t have the time to worry because I continually reassured him it would be okay. Either way, I did notice him spending a lot more time in his room.

During that same school break, also came his orthodontic braces. For any kid having a metal bracket attached on each tooth is no picnic. There are many sensations in your mouth at once: the thickness of the brackets and how they tear at your cheeks and the tightness the metal causes on all of your teeth just to name a few. Coincidentally, Jenna was getting hers off the exact same day Ryan’s came on—the irony of that was not lost on any of us. But, I anticipated she would be a good visual to show the final result. Plus I thought I needed to tell him something tangible that the braces would do, so I told him we needed to make his teeth strong so he could continue to eat his favorite snack. He did great while getting the braces on: sat nicely and stayed calm–I was so proud. It wasn’t until later that evening when I realized how long he had been in his room alone when he came to me and said. “Okay mom, I’m ready for my new teeth.” As if the braces could work that fast.

Every time he tried to eat he practically cried from the pain. Ryan is a tough kid, so for him to say something hurts, it must be really bad. Needless to say, he didn’t want to eat much. And I heard the phrase “You have to take these braces off” a lot. He spent more time alone in his room those first few days. Processing: I assumed. Then, it was time to go back to school and he pepped up. I hoped he had found his way to deal with the braces. Ryan is one of the very few kids who wants to go back to school. He loves the routine, the schedules and the predictability. Even minus his life-long friend, he went back willingly. Even with the new braces inserted in his face, he was ready to roll.

Well, that’s enough change for now—I thought. Of course it wasn’t. We received notice that his school is closing. Let those words sink in for a minute. His school is closing at the end of the year.

For those of you who read my book, there is a considerable amount of time I discuss finding a school for Ryan when the public school was no longer an option for us. There are only so many schools in our immediate area and the continual ‘no’s’ I received were just one painful slap in the face after another. So the thought of finding another place that could fit all our needs, is to say the least, daunting.

More change… Will he handle it? Can he handle it?

He has heard us say the school is closing, but I don’t think he gets the finality of it. I don’t think I get it yet either. And I’m not ready to prime him for this change. Again.

So, what we do now is: pray; keep our fingers crossed; throw coins in a fountain; blow on dandelions; and send all the positive “vibes” we can to people in charge of Ryan’s school to keep it going…somehow.

I can keep the faith, and make wishes—that is what got me this far. But, sometimes I just really hate change.




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Paint can’t take it away

Reflection can sneak up on you at the most unexpected moments. One would presume nostalgic contemplation at graduations, weddings and funerals. But, I had a moment of surprising melancholy yesterday in Ryan’s bedroom.

Now that he is in sixth grade and almost a teenager, I thought it was time to upgrade him to a big boy room. We asked Ryan, if he indeed wanted a new room and he unexpectedly said yes—as ‘no’ is his favorite way to respond for most queries. We happily showed him pictures of bunk bed/desk combinations and he picked one we all could agree upon.

Next, I spread out the paint color-wheel like a dealer in Vegas and asked him which color would he like his walls to be. He stopped me mid-spread and said with a firm tone, “I still want the tree.” I knew immediately what he meant. When we moved into our house the former owner had hand-painted Winnie the Pooh’s Hundred Acre Tree from floor to ceiling in the corner of the room. It is a definite focal point and apparently meaningful to him and I was almost relieved he still wanted it. Like it would preserve some of his childhood.  I also found it remarkable he could convey that he wanted to keep his tree and it most certainly signified an emotion I wasn’t sure he had: sentimentality. This big boy upgrade was proving to be quite eye-opening.

Once the tree was settled, he looked at the paint samples and I learned that he picks paint as quickly as I do. Hey if you see what you like, you just know. He pointed to a brilliant blue called “pool party”.  Seemed a perfect color to me, and the name just evoked lazy summer days by the pool. (Someday I will fulfill a life dream where my job will be to envision names for paint colors. I have so many ideas…)

A few days later, I decided to be safe and ask him once more about his color choice. I opened the color wheel to the “family” of blues he chose and again his finger flew to pool party. I was relived he picked he same one and wasn’t randomly choosing color. So, for good measure, I asked one more time before the painters came. I even tried to mix him up, but he diligently scoured the wheel looking for his pool party and again chose it. Done. Plus, I knew if I asked again I would probably get yelled at.

Bed ordered; paint picked: it was now time to clean out the little boy room. I began to find things I hadn’t seen in years: sentence strips for his picture schedules (‘Play with Michelle’, ‘Eat breakfast’, ‘Go to school’), pieces to games he played while in therapy, piles of keys and coins he no longer collected. But it wasn’t until I began to peel off Velcro strips that the memories over took me.

I sat down where his ‘therapy’ table had stood years before and saw the blue line it had left on the wall. Right above it, a large hole that was probably the outcome of one of his angry tantrums. I rubbed the spot and felt a surge of sadness knowing this dented drywall would be patched up and painted over.  It worried me those memories could someday be washed away too.   The many days he spent there with his therapists working hour after hour; learning his colors, letters, signs, numbers, facial expressions, and eventually his words.   All the time he worked in that spot so he could figure out how to ‘fit’ into our world, truly humbled me.  I don’t know if I would have worked that hard.

Even though new furniture will sit where he once did; I will remember that little folding blue table where it all started. With people who painstakingly patiently taught him again and again; people who have left this earth and people who still work with him today. I vow to not let a new color cover my memories of the uncertain times early in his life. Because those are the times that made him and us, who we are today.

I hope I never forget how far he has come; and in a few years when he moves out on his own, reflect on this stage and all he has accomplished.  I can safely bet I will be just as touched then as I am now.



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