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Our World of Small Miracles Raising Twins With Disabilities

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We have the honor of raising three children who each have incredible gifts. I have loved watching them grow and learning from them each day as they become the people they are meant to be. Parenting is not an easy job by any means. It is full of self-doubt and worry, but it is also full of unforgettable moments when you realize you may be doing something right.

I love to get those reminders from my social media of memories I posted like, “I just found myself saying, ‘Do not put that pineapple in the microwave.’ Ahh, the joys of parenting boys.” It is so easy to forget those funny moments and worry more than celebrate. That is especially true for parents raising children who see the world differently and that the world does not always understand.

I love this quote from “What I Should Have Said” by Rob Snow. “We get to watch our children overcome or work through obstacles, appreciate things in life we’ve never considered, and stay more determined than any group ever encountered. We know things are not always positive and we each deal with various medical, physical, and emotional issues. We deal with being treated differently, sometimes terribly. But at the end of the day, we have experienced hope, admiration and compassion like few have. We have learned amazing things that will stay completely unknown to most of this world, and we have discovered parts of ourselves that we never knew existed.”

That describes our world very well on most days as we do our best to raise our 12-year-old twins, both of whom have disabilities.

They have taught us how to pay attention to the little moments we used to take for granted. On our tough days, all it takes is to read a previous IEP to remember how far they have come. This is especially true of our Nick, who at 4 was non-verbal and experienced lengthy, self-injurious meltdowns. He could talk, but he wouldn’t unless he was pushed to do so. He was talking at 2 and then stopped. Not unusual for children with autism, but it was incredibly hard to watch him lose the ability to communicate.

We needed to try and do something, so we started to pursue alternative therapies that included yoga, tutoring, photo light stimulation, pressure point stimulation while walked across a balance beam blindfolded, a home exercise programs, limited his access to technology, using a Chi Machine to help him sleep, and a nutritional analysis that told us what he should and should not eat based on a blood and urine sample. It took us a long time to figure out what to do as this was expensive and meant we had to drive him 45 minutes away three days a week for sessions. It turned our lives upside down. Some of the shifts in his diet and the exercise program reopened his communication center and allowed us to see glimpses of our funny, loving little Nick again. It felt like a miracle and made all the stress of trying to get the therapy set up well worth it.

Even with all the progress he has made, he still struggles significantly with communication. He isn’t always able to connect to others even when they are trying their best to connect with him. That is hard for us as we always feel the need to explain him to everyone, although we have no idea why he connects with some people and not others. It is also hard for people trying to support him to feel like they can’t help. We are fortunate to have many family members and friends who try hard and try often to find ways to connect with him, no matter how long it takes.

We measure success in a series of small miracles that would seem like no big deal to most people.

The first time he got dressed on his own was a pretty amazing day as we worked on it for months and months. The first time he spoke to someone else without prompting was a pretty amazing day as we work on that one all the time. When he makes subtle observations about the world like a new door in the horse barn where he goes for occupational therapy that no one else noticed, it becomes a pretty amazing day. The first time he could take the dog around the block on his own without us following to be sure he didn’t get lost was a pretty amazing day.

The time he wanted to read the Harry Potter books because “Wouldn’t it be better if I could read like Henry (his twin brother who has always been a strong reader)?” was one of those heartbreaking and yet unforgettable days. He could articulate what he wanted. He stretched for something that felt out of reach and was willing to work for it. For months, we listened to the audiobooks, followed along in the text, and watched YouTube videos to make sense of the parts that just didn’t make sense to him. The moment we got to the end was a fantastic day. We celebrated with a surprise trip to The Wizarding World of Harry Potter in Orlando, so both boys could watch it all come to life.

This time of not knowing what is going to come next has been incredibly challenging. The boys transitioned to a new grade level this year with all new people, which would be hard for them on a typical day, much less during a pandemic. We started all virtual and have chosen to continue with it even when the building is open again because we can’t get it wrong when it comes to school. They need predictability in their schedules and routines, which is not possible with days on, days off, and the chance of quarantine.

We are fortunate that my husband could switch to working second shift to be with our boys during the day. It’s been hard on us, but turning our lives upside down to do what is best for our kids is not new — much like many other parents. We are also blessed to have a wonderful team of educators for both boys who are finding ways to help them grow even when they have never met in person and are struggling themselves to figure this all out.

Nick has regressed a lot in the last few months in his interest and capacity to interact with others. His processing time when trying to make conversation is more delayed than ever. These are the things that keep me up at night. The idea of living through another time where he is closed up in his shell is terrifying. The minute we get a glimpse of that, we panic. Then, as usual, he reminds us to pay attention to the little things. His math skills have suddenly grown from still trying to identify the numbers 1-10 to asking questions about division and fractions. We had to pay attention to small questions he has been asking about numbers and how they work to know he was ready for new concepts and then patiently wait as he tries to explain his thinking to us.

He’s had a few moments lately that have helped me breathe easier and know that he will make it through this time of isolation and fear just fine. When my mom passed away two years ago, we inherited her puggle. She was my mom’s faithful companion, best friend, and a very ugly dog. We had also gotten Nick a puppy that we were hoping to train as a companion animal just before bringing Bella to live with us. He has called the puppy the “Demon Dog” since the day we brought him home, but fell head over heels in love with the 12-year-old, overweight puggle with tumors all over her body who the vet told us had only a few months to live. This was going to be a problem.

He would tell her every day that she was his best friend and how much he loved her. We did our best to love the heck out of her and made it almost two years before she passed a few weeks ago. We had been preparing him for some time that this may happen, but he would hear none of it. The day she passed, he went totally into his shell and just sat in his room for a really long time alone, repeating over and over again, “I’m fine. I’m fine.” It was crushing.

The next day, all on his own, he took the puppy (who is now 2 and a great dog) to his room and spent about an hour trying to train him to be a “good dog.” He was not convinced at the end of their first session. However, we were hopeful that he seemed to be understanding the loss and was trying to find a way to move forward. Then, he seemed to disconnect all over again. He didn’t want to talk about it and immediately went quiet when anyone else brought it up.

A couple of days ago, we found her collar under his pillow. When I asked him about it, he said. “Mom, I found it in the drawer. I was worried someone would throw it away, so I put it under my pillow. She was the best dog ever, and now I can feel close to her every day.” Tears are now streaming down my face. I miss that dog every moment of every day as she was such a light for him, but she was also a daily reminder of my mom. Her loss was challenging in many ways, but the fact that he could articulate how he felt about it and how he would keep her close was oddly an incredible day. His connections are always on our minds. This one came in such a powerful and unexpected way through a dog that came into our lives out of grief and tragedy.

We never know when we will find one of these bright spots, and if we aren’t careful to watch for them, we’d miss them. We recently saw our extended family. We had the regular kind of nerve-wracking moments we feel when we go to an event and are not sure how our boys will do. We have seen very few people in recent months, so this was a stretch for all of us. Large groups will often shut Nick down if we don’t prepare on the way there for who we will see, how we know them, and remind him of expected norms in social situations.

He loves jokes, so we have worked with him to tell a joke when he does not know what else to say. He did that with an aunt who he didn’t know very well when she greeted him. A few days later, she sent him back a joke via Facebook. Now, they send each other a joke of the day each day. He gets excited to hear her super corny jokes and make a video with a super corny one of his own to send back to her. His delivery gets better each day, and he is excited to read joke books and think up new jokes to tell her.

We caught what would have been a tiny thing to most people and tried to capitalize on it. It has created a connection for him that is meaningful and will last. We never know where to expect our small miracles, but are certainly thankful when we find them. They always seem to come in a moment when I need them the most. Good thing I’ve learned to pay attention to the little things and find moments of joy in what, for most people, wouldn’t feel like a momentous occasion. Who would have ever known an ugly dog and awful jokes would be two of mine if I didn’t slow down enough to notice and celebrate a world of small miracles. Maybe we all need to slow down a little more and see each moment, so we don’t miss the ones we need to see the most.

Getty image by Sabrina Bracher.

Originally published: February 16, 2021
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