Shooting for the Moon with Ryan

Life in the World of Autism


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Summer is Definitely Hard

IMG_1788Summer is definitely hard, even though Ryan gets more pool time and play time. He usually regresses, and this year it’s in speech. He’s being a very quiet little boy. It’s hard to get a yes or no out of him. I know it’s just the summer time blues, a change in routine, anxiety about not knowing everything that’s coming up next. But it’s still difficult to watch.

Today, I looked back in my journal. I tend to write the old-fashioned way with pen and paper, then retype my journal entries into my blog. As I browsed some of my writing, I came across a journal entry I wrote in the spring that I never typed into the blog. Interestingly enough, it was about Ryan’s speech and a break through he was having. Below is the journal entry, dated March 12, 2015:

A few weeks ago, out of the blue, Ryan said to me “Principal Young got duck taped to the wall. It was so funny!” (Principal Young chose this stunt as a reward for the school raising money for a local charity.) That was the first of a series of small stories that Ryan started telling me about school. Ryan never talks about school unprompted. And if we do prompt him, he usually tells us that he had a good day in school, but no specific information.

I was floored when he gave me this information about the principal. I immediately e-mailed his teacher. She said that he was also telling her small stories about home. For example, he went strawberry picking, grandmom and granddad visited, he ate chili for dinner.

I used to mourn the fact that Ryan didn’t speak until he was three. When all my mommy friends were bragging that their child was saying big words and had an amazing vocabulary, I just wanted Ryan to say Mommy. I hated missing out on the joys of watching my child learn to speak. Then one day, close to Christmas break, Ryan had a break through in his three-year old special needs preschool class. His teacher put a microphone in front of him, and asked, “What does Santa say?” Ryan said “Ho! Ho! Ho!” The teacher found what motivated him to talk. A microphone. This was one of the first time Ryan spoke in class.

I was so proud of Ryan’s “Ho, ho, ho!” that I had to tell grandparents and friends right away. That is when I realized that I wasn’t missing out on the joy. I was experiencing the same joy and pride as the parent of the typical child, but just a little later. In fact, the pride and joy was probably even greater because I had been waiting for it for so long.

So now, I’m joyfully collecting all the little stories about school and writing them down as soon as I get them. They’re too great to forget. He said, “Trent wanted me to throw my applesauce at lunch, but I didn’t want to.”

“I looked at a really good book at school. It was Arthur’s Teacher Moves In.

“I read a poem about the moon.”

“Mrs. Perkins had two kids missing today.”

“I dropped my library books on the floor.”

“I didn’t check any books out because I ran out of time.” 

“We didn’t have PE because of a schedule change.”

After reading this journal entry, I realized Ryan is always going to struggle with his speech. He’s going to continue to take a step ahead and then two steps back. But I’ve learned that each step back never completely goes as far back as it was before. There is always progress being made.  It won’t be long before he takes two steps ahead again. I’ll probably be writing down little stories again in no time.

 

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Experiencing Your Child’s Unexpected Growth is a Unique Gift for all Special Needs Parents Everywhere

IMG_1752Everywhere I go, I hear children saying how excited they are that school is almost over for the summer. But that’s not the case for Ryan. He would go to school year round with no breaks if he could. This is the hardest time of the year for Ryan. Transitioning to the summer is hard. Losing what is familiar is hard. And losing the structure of an established routine is hard.

So all of his anxiety comes out with trouble sleeping. Ryan is the type of boy who never naps or just falls asleep in the car or on the sofa. It has been this way his whole life. The only time that happens is if he is sick. Otherwise, he needs to go through a structured bed time routine to fall asleep. And heaven forbid if my sound sensitive boy hears a dog barking, thunder, a lawn mower, or fireworks while trying to fall asleep. So he takes melatonin, a natural sleep supplement, to help him get to sleep, and guanfacine to help him stay asleep the whole night. But they don’t always work.

Sleep issues! They are so common in children on the spectrum. And they are one of the most difficult problems to deal with. If a child isn’t getting enough sleep, his parents are getting sleep either. Then everyone is walking around tired and grumpy. So sleep problems come back full force when Ryan is experiencing big changes in his life. But it will get better.

Right now, I’m grateful for all of the wonderful people in Ryan’s life, especially his teachers and therapists at school who have helped him learn and grow this year. Ryan loves school. That says a lot for the kind of nurturing he is getting there.

When Ryan started kindergarten two years ago, he didn’t talk at school, even though he was able. They’d give him the teacher’s walkie-talkie to encourage him to say something. When he finally did says something (He said “When will it stop?” about the alarm during a fire drill.) the whole class clapped. He started first grade talking up a storm. He began being more social with his peers and teachers. By the end of the year, he was asking for people’s names and talking about his likes, dislikes, wants and needs. He was playing with other kids on the playground. For the first time in his life, he had an answer if someone asked him who his best friend was.

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So, the end of the school year is an emotional time, as we think about what the school year brought and what new things will be ahead. And although it’s an emotional time for the parents of typically developing children, there’s nothing like the emotion and joy that comes with seeing the growth of a special needs child when you weren’t even sure if you’d see a lot of growth in the first place. That elevated joy is what makes parenting a special needs child a unique gift and special privilege, and one reason why I wouldn’t change my life for the world.