Shooting for the Moon with Ryan

Life in the World of Autism


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Why I Could Hug Whoever Invented Camp for Kids on the Autism Spectrum

I have to admit, I have the same smile on my face as the other parents after I drop my son off at summer camp. A day to myself! I can get so much done at home! I can also relax a little, take a break, and know that my son is in good hands.

I want to hug the person who came up with Camp Boomerang, a YMCA day camp for kids on the autism spectrum. I want to hug the volunteers, mostly teenagers, who agree to get training and spend long hot days in the sun being a buddy for Ryan.

Without all of these people, Ryan would be at home all summer. He would never  have the opportunity to experience camps like other kids. Every day, he gets to swim and play on the playground. He gets to do yoga, art, music therapy, archery, sports, hiking, and play outdoor games. He gets to spend time with typically developing kids, and gets special attention from a buddy.

He’s really growing from this camp opportunity. At our neighborhood pool, he put his face in the water for the first time. Someone must have taught him at camp. Or, he copied what the other kids were doing. Right now, Ryan is very aware of others and is more open than ever to copy what he sees other children doing.

It’s really amazing to see Ryan wake up in the morning with a smile on his face. He seems to really love camp. I say “seems,” because he never says much about it. If I ask him if he likes camp, he says yes. He shows how he feels more with his actions, like being ready and in the car on time for camp everyday, rather than with his words.

It’s hard to find activities that Ryan can enjoy, since they need to be structured and not too over stimulating. His buddy told me that he didn’t want to jump in the bouncy house one day. So they decided to swing instead. They are flexible and they need to be. You can’t assume that fun activities most kids enjoy will be fun for kids on the spectrum, especially if they have sensory processing disorder. Ryan doesn’t like the sound of the loud fan that keeps the bouncy house inflated. He also doesn’t like the closed in feeling and the closeness of other kids bouncing around him.

For me, it’s kind of neat to see other kids like Ryan being dropped off at camp and know that he is not alone. It’s good to see other autism parents and know that I am not alone. One thing about autism parents is that we don’t get out a lot. We tend to be isolated. Our children aren’t always capable of doing well in public. We avoid many places if we can.

But here we are, dropping our kids off at summer camp for kids on the autism spectrum. We look at each other with knowing glances. We smile at the familiar behavior of the children we are ushering toward the camp meeting spot.  I see big kids holding their parent’s hand through the parking lot, even though they seem too old for that. They could bolt. They don’t always understand the danger of a parking lot. I see kids taking a long time to get out of the car. Transitioning is hard. I see the same uneven gait as my son, arms flapping, with happy faces that have a dreamy, far away look, enjoying a rich inner life.

And I hear bits of parents conversations as they try to remember to tell everything to the camp counselors. They ask lots of questions. Is he eating his lunch? Did he do o.k. in yoga today? Did he stay with the group? Did he finally participate in art class?

We all sort of hang around the parking lot an extra minute, craning our necks to see if our child is doing o.k. as the camp buddies lead their kids toward the first activity. Then I see that the smiles on those parents faces match my own as we drive away knowing all is well.

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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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Baby Steps, Breakthroughs, and Steps Backwards

Most children on the autism spectrum suffer from a combination of anxiety and sensory integration disorder. Put the two together in various combinations and you often get a child who would rather stay home.

And that is what we have been dealing with in Ryan since he was born. It’s so much easier for him to stay home than to go out into the world and deal with the bright lights, loud sounds, and unexpected surprises of the world around him.

Just getting him out of the house and into the community has taken years of baby steps, breakthroughs, steps backwards, and leaps ahead. Mostly, we have been using what is known as exposure therapy without even knowing it. We have been slowly and steadily insisting that Ryan participate in the world around him.

Last Saturday, we took Ryan to a children’s museum for the first time. It’s the kind of museum that looks like a small town. There’s a supermarket where the children can shop for pretend food, a fire hall with a life-sized fire truck, and a doctor’s office with x-rays, scales and exam tables.

Of course, Ryan did not want to go to the museum. His anxiety is higher in the summer when the structure of school is gone. Knowing exactly what he’s doing everyday is calming for him. But we put him in the car anyway and drove to the museum, even though when we got there, his dad had to pull him out of the car and carry him into the museum.

Once inside, Ryan instantly put his hands on his ears and stood next to the wall near the exit. Now, this is actually an improvement for him. Two years ago, he would have bolted for the door and had a huge melt down. The visit to the museum would have been over in 5 minutes.But Ryan stood to the side and looked around him. As he got curious, he began walking around the museum, watching other children and looking at what was around him, with his hands still firmly planted on his ears.

I can’t pretend watching any of this was easy for me. I always hope that Ryan will walk right in and start to play. I was feeling frustrated and sad all at the same time, wanting my son to have fun and enjoy what all children get to enjoy. I second guessed myself and wondered if it was even a good idea to take Ryan to the museum in the first place. Why make him do something he doesn’t want to do?

And I wondered over and over if I was missing something. Could I be doing something to make this all easier for Ryan? Should I explore anti-anxiety medicine again? It does work for some children. Yet the FDA has not approved any of these medicines for children at this time. He’s not old enough for Cognitive Behavioral therapy, although it has proven to work really well for anxiety. And why won’t Ryan wear his ear plugs today? Sometimes he just refuses. I kept trying to interest Ryan in one of the play areas and he kept telling me to go away. So I stood back and watched him from afar.

Then, after 45 minutes of not playing, when Ryan thought I wasn’t looking, I saw him start to smile. He walked over to the pretend bank, got into the pretend car that was parked outside the pretend teller’s window, pushed a button, and made the capsule fly up through the pretend tube. I could not believe my eyes. I really thought we would end up leaving without Ryan playing at all.                                              .IMG_1795

Next, after taking his hands off of his ears, he went inside the bank and sat at the tellers desk. He even turned the handle on the safe.

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He followed some kids to the supermarket, got a cart, filled it with food, and checked out at the cash register.                                                  IMG_1812

He also spent time at the pretend cafe, cooking food in the microwave and filling a customer’s glass with a pitcher. But his favorite part was the pretend airport, maybe because his daddy travels on airplanes a lot. He kept running through the scan to make it beep and playing on the pretend airplane.

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About an hour into his play, they announced a dance party on the stage. They started playing loud music as the children danced to the rhythm. Ryan conveniently found that spot by the wall near the exit to take a time out. I never realized how loud things are until I had a son who was sensitive to it. But Ryan waited patiently until the dance party was over and then continued to play. In the past, he would have insisted on leaving.

Ryan’s ability to handle going out into the community varies from day-to-day. It depends on how familiar he is with a place. It depends on his mood and if he’s feeling more out of sorts or insecure due to changes in his life or a lack of structure. In general, Ryan’s ability to enjoy kid’s museums, malls, restaurants, is getting better. I think Ryan will always enjoy his alone time and will always be the keen observer. But for now, we’ll just keep plugging away and exposing him to everything in the outside world that we can.


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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.