I’ve been keeping a secret from Casey and Rob for several days. Tomorrow, they will be going back to Hopewell! It is going to open! Casey can’t stop giggling – and asking questions. Rob just stared at me. He finally said, “Tomorrow’s Hopewell?” and I said yes, they are finally able to open. His eyes started twinkling and he had such a cute smile. He ran to his room, but came right back with a question – “Bob?” He wanted to spend time with Bob and was worried about that.
But I told him he would still see Bob and that he would be going to aquatic therapy. Now, he is getting excited and I can hear him giggling as he lists favorite foods from fast food restaurants. Casey is so happy that she will still get to have a treat with Reagan and buy a coloring book. They are so happy!
I am happy for them, but …. I’ve really had fun with them over the last three months (and I can’t believe it’s been that long!). Yes, we had a few rough days, but we have those anyway. We walked every day. We did crafts. We tried to play new games (and that didn’t work out very well). We had lazy days of doing nothing but hanging around the house. They entered a cupcake decorating contest and posed for pictures for a photography contest. (By the way – I wish everyone had a county board of DD like ours! They have been amazing during this whole crazy time!)
They learned some new exercises – she prefers the bike, while he likes to box. We found a bald eagle’s nest and saw the baby. We spent a lot of time on the patio in the swing. And we discovered that Casey gets tired of her little brother following her around. We saw his sense of humor come out as he held things above his head so she couldn’t reach it. We hear long black train 50,000 times – some days louder than others.
We learned that it is possible to get through a day without power. (A bad wind storm took out our power for 24 hours). It used to be that as soon as the power went off, Rob started saying “lights on” and didn’t stop until it came back on and she screamed because her iPad didn’t work. (they both have apps to use, but she likes to watch videos). And no one would sleep. She actually went to sleep in the recliner. He didn’t sleep until 5 that morning, but he didn’t constantly ask for the lights. He laid more or less quietly. A miracle for both of them!
He learned that icing on cupcakes isn’t so bad. He even put the icing on them and decorated his 12 cupcakes all by himself. I was in tears – he refuses to let gooey things touch his fingers. And then to watch him eat it! (The look on his face when he took the first bite was priceless – I thought he was going to gag, but he watched Casey eat hers and followed her lead. 🙂 )
When I first heard that everything was going to close for “a few weeks,” I knew it was going to be a hard time for us. Changes in routine are not good – and some of those changes were big ones to Casey – her birthday, track and field day, grandpa’s birthday. But she handled the cancellations like it was no big deal. And, while Rob did ask for Hopewell a few times, he didn’t seem upset about not going.
But then we had to cancel Hopewell for all of April…. and then May… and the talent show and prom. My birthday, Easter, a trip to the zoo with camp, then summer camp. And she kept accepting the changes like it was not a big deal. He only asked for Hopewell a few times and then never mentioned it again. They got used to seeing grandma and grandpa from the car. And then we cancelled Hopewell for June. (it was easier for her to see the whole month canceled since I had no idea when or if they would even open this summer)
And she still was okay with it. As long as she had something to do each day, she was happy. She painted t-shirts and picture frames. He painted wooden models.
The way they have changed in the last year continually surprise me. I know many of you weren’t able to enjoy the time together like we were. While I do work from home, I had time to do it in the mornings and while they were busy with their own interests. I didn’t have to homeschool and didn’t lose my job. I was able to really be with them as we haven’t been able to in a very long time. During “normal” times, we did do lots of things, but evenings were not together – they needed down time from being gone all day and I was tired after being at school all day. Truly, to use, the last three months have been amazing and much needed together time.
I don’t write this to brag. I write this to remind all of you to keep dreaming for your child. No matter how exhausting and frustrating life is, you can’t know what the future holds. No one that knew Casey as a child would have imagined the young woman she is today. She screamed at the slightest change in her routine. She screamed for hours and beat her head on anything around her. She ran from people – she had no sense of danger.
Rob’s anxiety at changes in his life was debilitating to him. He couldn’t sleep and he ran away. He refused to eat most foods and was terrified to try anything new. While new things are still not his favorite, he is willing to try. And both of them are communicating more with what they need or want. (Anxiety breaks this down quite a bit, so we still have issues often with them not being able to tell me what’s wrong).
Hopewell will look a lot different to them, as they have had to do many things to follow the state’s guidelines. I am a little concerned about tomorrow, but their excitement about going back and still being able to go with Bob and Reagan is contagious. I am happy for them – and also a little sad. I’m excited to be able to have lunch with Tracie tomorrow and to be able to run errands with a little more time to get things done, but I will miss them. I never in my wildest dreams thought this stay at home thing would be as much fun for us as it was, but I thank God for it.
I thank God for the little moments that so often get missed in our usual busy day to day lives – listening to Rob read a book to me or sitting on the swing with Casey. Our long walks. His tight bear hugs and her giggles. I see these things often, but I don’t always appreciate them. That’s my new goal – to really appreciate those little things, even when life gets too crazy again.
Even a few years ago, this would not have been our stay at home time. Please – never stop dreaming and planning for your child’s future. There will always be bright spots and small steps forward. I’ve been told that I don’t write about “real” autism – that my kids are more high functioning than many. They are doing amazing, but we worked hard to get to this point. We have had a lot of tears – a lot of sleepless nights – a lot of frustrating times to get here. Never give up!