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Monday, February 4, 2019

A Service Dog for Aidan

My boy Aidan. If you are lucky enough to be a part of his life, you are truly blessed. He is full of light and spirit. His name actually means “little fire,” and we picked that name for him when I was pregnant with him because of the constant gymnastics he kept up for 7 months. All my babies thought they were fully cooked at 6 or 7 months of pregnancy, so they decided to pop right out and not worry about their under-developed lungs, brains, immune systems, eye lashes…silly kids.

Our fiery Aidan has always felt that life is challenging. At first we didn’t recognize how hard regular life was for him. We thought he just had some quirks and would grow out of them. He didn’t. The quirks turned into full-blown challenges. Full on Special Needs. 

People often remark that they never saw Aidan’s difficulties coming. “He’s so social,” everyone says. He is social. He has always been social. He adores people and animals. But if you have lived with him and cared for him every day, like we have, you would have seen the struggles coming from the beginning.

Aidan never liked to leave the house, even as a toddler. He preferred to stay home. He had sensory issues from birth. He couldn’t sleep. He gave up naps the week he turned 2. When he was three years old and went to day care for 2 hours, twice a week, it was a nightmare. Every single day of preschool, Aidan cried when I dropped him off. He spent two years at the same preschool, with the loveliest teachers you can imagine. He loved his friends, he loved his teachers, he loved learning. But he couldn’t stand to be away from Mama. I learned to give him just a whisper of a hug at Drop Off. I would quickly kiss the top of my boy’s head and with my lips will him to be able to handle the day. I’d hand him, crying and screaming, to his wonderful teacher and I would turn the other way and shed my own tears in my mini van. 

Aidan’s separation anxiety never got better. It stayed at the same intense level even when it should have been lessening and he should have grown out of it. Aidan reacted the same way to getting on a school bus in Kindergarten, 3rd, or 6thgrade as he had when I dropped him off at preschool all those years before. With terror. So many days I had to force him on the bus. So many days I would carry my boy up the stairs of the bus, plop him next to the bus driver, who would slam the door shut as I made a quick exit, Aidan screaming the whole time. It never got better. 

But Aidan got bigger. And there comes a point when a Mama can’t lift her boy onto the bus anymore when he’s screaming and thrashing as if you were making him walk the plank to his imminent death. There comes a point where you can’t force your boy to do what he doesn’t want to, or can’t, do. There were so many moments, watching Aidan struggle in unimaginable ways, that absolutely ripped my soul from my body. I can’t even describe what the past few years have been like for him. Gut wrenching.

Then a Mama really feels helpless. And hopeless. And like she’s a total screw up because she can’t even get her kid to school like all the other Mama’s can. 

And there seems to be nowhere to turn for help. Many people – even those who are meant to help us -- do not understand the struggle of invisible disabilities because they can’t see the problem. There’s no wheelchair or physical differences. There’s no outward sign of anything being wrong. Aidan looks like a friendly, beautiful, spirited, “normal” boy. Aidan looks fine. So there must not be a problem. It must be all in Mama’s head. 

A Mama sometimes really feels helpless.

But I never give up. So even when I don’t know where we will find help, I dig until I find it. I ask friends questions, I read books, I question doctors and therapists, I search the internet when I should be sleeping, I look until I find something to try. 

We got Aidan all the help we could find. He did every therapy we thought might help him. For years. Our psychiatrist put him on medication to try and alleviate his discomfort that life thrust on him. For years, we begged his school to give him the accommodations he so desperately needed. He didn’t get the help he needed as soon as he needed it, because his disabilities are invisible. Some people don’t believe in anything they cannot see.

It took a lot of advocating to get Aidan’s needs met. We’re talking years. Years. Despite my very very best advocating efforts. Despite hiring lawyers, an advocate, a behavior specialist familiar with Tourette Syndrome. Despite everything I did, invisible disabilities – even when you have concrete evidence of their existence – can be denied by others who need to see to believe. 

It makes me sad that people can be so narrow minded that they can’t acknowledge that something can be unseen and still be very real. As Robin Williams so perfectly put it, "All it takes is a beautiful fake smile to hide an injured soul and they will never notice how broken you really are."

In 6thgrade, life got to be too much for Aidan to handle. He completely shut down. He became more anxious and depressed than I’ve ever seen him. To the point that we could not leave him alone. He physically could not go to school. I tried every single trick I had to help him cope. To help him get to school. To force him to get to school. Every morning I would put my arm around his thin shoulders and pull him along to the bus stop, where all the other middle school neighbors waited patiently for the bus, and my boy would be screaming and crying hysterically and freaking out to the point I would start crying too. 

These are pockets of memories that I try to block because they are some of the most raw and heart wrenching experiences I’ve ever had with one of my children. To see your child suffering to this extreme is just too much.

It was just too much to bear. It was too much for either of us to bear. 

The school sent their social worker to try and get Aidan to school. She came several mornings. It didn’t work. The school told me to take Aidan out early every afternoon and homeschool him for a couple classes so he could be home more. It didn’t work. Finally, the world was seeing what I had seen a decade earlier: that for some sensitive children, typical life is too much to handle. That some beautiful, sweet souls need a lot of extra help to get through “normal” life.

Aidan started going to a therapeutic day school almost exactly one year ago. These people, they’re amazing. They give Aidan what he needs. They understand him. But there are still struggles as big as mountains. The school is an hour away from our home. That’s a long commute for anyone, especially a 13 year old boy with intense anxiety. Aidan’s depression keeps him from getting out of bed some mornings. His anxiety keeps him from completing his modified school work. His agoraphobia keeps him from leaving the house. His ADHD makes focusing on his school work near impossible many days. His OCD gets in the way of completing assignments efficiently. His PANDAS and tick-borne illnesses cause his body to have tics and other symptoms that frustrate and exhaust him. It’s a daily, constant, ongoing struggle. 

Even though there is an excruciating battle going on in Aidan’s head and heart every single day, between anxiety and who he wants to be, Aidan is still full of light. His energy is more beautiful than I can put into words. All living things feel drawn to him- humans, animals, even plants. He has always made friends wherever he goes. Always. We’d show up at a playground when Aidan was a little boy, and in literally 3 minutes he’d be leading around a pack of kids he’d never met before, like Peter Pan and his Lost Boys. All of them running and laughing and following my Aidan. Aidan’s siblings chuckle because they have no idea how he can instantly connect to anyone, anytime. Despite his challenges with invisible disabilities, Aidan loves being around people and animals. He truly is “so social.” Sometimes his disabilities just get in the way of who he really wants to be.

Recently, Aidan’s therapist recommended that we look into getting him a service dog. We couldn’t believe we hadn’t thought of this before! Aidan is so attached to our two little Shih Tzus, and every animal he meets he falls in love with. When we go anywhere, Aidan asks if he can bring our puppies. But they are not service dogs. They are not allowed to come with us to restaurants, to school, on airplanes, to the ice cream shop. So Aidan refuses to go to those places most of the time. He refuses to go to his Grandma’s houses. He refuses to go to the movies. He refuses to go play at the park. Sometimes he refuses to go to school. He is shutting more and more of Life out.

I didn’t know the first thing about getting a psychiatric service dog, but I knew I would do whatever it took to figure it out, because it would be life changing for Aidan. 

I researched how to get a psychiatric service dog for anxiety and depression. Most psychiatric service dogs are only trained to help veterans with PTSD, so it is difficult to find an agency that can help a child like Aidan. I reached out to all my contacts that might have information. Aidan has some incredible angels in his life, people who still feel touched by him even though they no longer interact with him. These special people helped me locate agencies that might be able to help us. 

The first agency I applied to declined our application because they didn’t have a good fit for us at this time. I spoke with the owner at another agency in Florida- Canines 4 Hope. (canines4hope.com) She told me about their program and I told her about Aidan. She said they can definitely help us. My heart soared. The owner said once we complete the initial paperwork and send in our deposit, Aidan will come and choose the dog that he feels a connection to. He will get to name it. He will be in charge of caring for it when it comes home with us. He will sleep with the dog, eat with the dog, eventually go to school with the dog. The dog will be legally allowed to go anywhere humans go. We will travel to Florida several times for Aidan to participate in training the dog. When we bring the dog home, it will be Aidan’s best buddy.

When we told Aidan about this, he glowed. He was so full of excitement and joy, it was like sunshine washing across his whole face. 

A service dog costs between $16,000 and $40,000! Gulp! We will have to include several trips to Florida as well. Most people who need a service dog do some form of fundraising, so we decided to start a Go Fund Me page. 

https://www.gofundme.com/y4pcr-service-dog-for-aidan&rcid=r01-1549291964-ea151003a8b54028&pc=ot_co_campmgmt_w

It took a big leap of faith. We know everyone has struggles, and it is hard to ask for help because we don’t want to burden anyone else. But we also know that this dog would be the best possible tool we can give our boy to help him handle life. That is the most important thing for us. So we will do whatever it takes to accomplish that goal. 

We don’t know how this adventure will play out, but we know Aidan needs it. So we will figure it out, like we figure out everything our children need. No matter the cost or the fear or the bumps in the road, we will figure this out for our boy. We want Aidan to have a companion that will make his life feel more manageable. 

The owner of Canines 4 Hope told me stories of successful dog placements. She said that one boy got a service dog when he was just about Aidan’s age, and struggled with the same things Aidan does. This boy was able to go – independently – to college, with his service dog beside him! That brought tears to my eyes because at this point, I cannot imagine how Aidan will be able to do anything like that. Aidan can’t even go to his public middle school right now. And there is no change in sight for him. We hope he will be able to take a class at his public high school eventually, especially because they are completely amazing with special needs. But that’s a long ways away. With a service dog, I can envision Aidan being able to do anything a typical boy does. 

I am so hopeful for Aidan’s future with the idea of a service dog by his side. I can’t wait to give him this tool.  I can’t wait to see how his joy grows.

We want to truly thank all the people who are helping to make this dream a reality for Aidan. You are directly responsible for helping Aidan be able to lead a happy, satisfying life. We are so grateful for each of you.
We love you!

xoxo