Moving Forward

It's no secret that things have been going well since Nick came into our lives full time. Ian is sleeping, and there have been no violent meltdowns since the beginning of May. Sean and I have been waiting for the "honeymoon period" of having him to be over before we let our guards down, but so far it seems as if Nick slipped into our lives as the missing puzzle piece we've been searching for.

I think the things that continuously amaze me are Ian's ability to put words to his feelings and the way he can start getting himself back under control. I've seen this happen a few times now, but last Wednesday was another one of those 'miracle moments' that I wanted to share.

Ian was in an accelerated learning camp last week, and he was exhausted every day when I picked him up. If I had thought about it I would have cancelled his therapy appointment, but it honestly never occurred to me (hey, it's summer and things are always in disarray in the summer). We arrived at the office with Ian in tears and refusing to get out of the car, but with some coaxing I was able to at least get him in the waiting area. He sat in the corner in a ball with his head buried in the neck of his shirt, and he was sobbing. He kept saying, "I'm not going in there. I'm not going inside," and Nick was sitting in front of him and putting his head on his knee. Ian was too far past the point of even recognizing the dog was there with him, and it took all I had to keep Ian from screaming and running out of the doors. His therapist came out when his appointment was set to begin, and boy was she surprised. She had never seen Ian in an overwhelmed state, and while you can explain what happens during an episode all day long, until someone actually sees him in the midst of one, it's hard to imagine. We worked together and were able to get Ian to go back in her office by walking off with Nick and telling Ian that his buddy needed him, and I was able to get them settled pretty quickly once we were behind closed doors. The therapist told me she would do easy things with him, so I went back into the waiting room to berate myself for not thinking ahead and for not just cancelling the appointments the minute I realized he was too overwhelmed.

Just like he's been doing lately, Ian surprised me once again. His therapist snuck out about 30 minutes into his session, and she told me she had gotten Ian down on the floor and that Nick had done exactly what he was supposed to. He lay right next to Ian, and then Ian and she were able to play a game of Battleship without any problems. In fact, when the therapist left the room to speak to someone and then returned, Ian actually said, "I'm sorry for causing a scene in the waiting room. I don't usually do that, and I'm sorry."

I am blown away. Even though it's been days since this event, I still tear up when I think about it. If you could have seen my son a year ago, heck, even six months ago, you would not believe he is the same child. Not only that, you wouldn't believe we are the same family that we were just a short time ago! While we are still on high alert, we aren't in panic mode. We can make plans without the constant fear that 'something' will happen. We laugh more. We spend more time together as a family of four (well, five, counting Nick) rather than the three of us doing something and hoping our son will join us. We are a unit.

We are happy.

Graduation Speech

As promised, here's the speech I gave at the graduation ceremony last night. They night went beautifully, and I'm still adjusting to the fact Nick is officially ours! (Pardon the layout. I set it up like this so it was easy for me to read out loud, so it isn't necessarily grammatically correct).

Ian was diagnosed with a moderate-to-severe hearing loss in September of 2011, and during our completely chaotic introduction to the world of audiology and hearing aids, he was also diagnosed with Pervasive Developmental Disorder which falls under the autism umbrella.    

As you can imagine, his father and I went through a myriad of emotions ranging from anger that our son “had autism,” to being thankful we finally had answers to what seemed like years of questions, and then back to anger again. We were thrown into a facet of life we had never even considered, and acronyms like “PT,” “OT” and “ST” became part of our every-day language. There were health insurance hoops to jump through and specialist appointments to navigate, and there were days we would be almost numb with the enormity of what we had to face.

It was rough. We had no previous exposure to children on the spectrum, but even if we had, I don’t think it would have mattered since every child is different, and that holds true for children with autism as well. We had to employ a “learn as you go” philosophy, and I can’t tell you how many nights I spent crying because the day had gone so horribly wrong.

As time went on, I truly felt as if I was failing my son. As his mother, I was the one whom he trusted to keep him happy and safe, and I was the one who was supposed to have all the answers. I obviously didn’t, and no matter how hard or how long I searched, things just seemed to go from bad to worse. With each meltdown and with every outburst I was failing, and I didn’t know what to do.

A friend and I were on the phone one day, and during one of my many emotional breakdowns, she mentioned Kids and Canines. As she explained the mission statement of their program, I felt the first real glimmer of hope I had felt in the years since Ian’s diagnoses. He had always loved animals, and I wondered if there might be a chance a dog could reach him in a way we couldn’t anymore.

I applied to the program, we completed interviews with the staff and the dogs, and finally our prayers were answered. We received the letter telling us we had been accepted to participate in the Team Training, and I wish you all could have seen Ian’s smile when we told him, because it was magnificent. We were all excited, but Ian’s happiness was almost overwhelming, and we assured him we would do whatever we could to bring a dog home for him.

As the starting date got closer, I grew more and more nervous about the training. I knew the pressure was on for me to do my best, and I was afraid I wouldn't be up to the challenge. In 2012 I had to leave my full-time job to focus on caring for Ian, so it had been a long time since I had done anything of consequence outside of family obligations, longer still since I had had to study for any sort of test, and I was afraid I was too out of practice to learn everything I needed to.

I can tell you the experience was exactly how I thought it would be, but it was also nothing like I imagined. I probably felt every emotion while sitting in the grooming room and listening to Mary and Jen explain how to get the most out of our dogs and while practicing commands. I grew frustrated with how much information I was trying to absorb yet couldn’t seem to grasp, and I was scared that I was going to mess everything up and be the one responsible for breaking my son’s heart. I was exhausted every day when I got home from our sessions, and after caring for the kids and then studying, I would fall asleep moments after turning off the light. But, through all of that I was excited May had arrived and I was working with Nick and starting to learn all I needed to know to bring him home successfully.

It was both the longest and shortest 2 weeks I can ever remember. Standing here now I feel as if just moments have gone by since Mike, Beth and I had our first lecture, but considering how much I’ve come to care about and respect the entire Kids and Canine staff, the volunteers, and the kids who train these wonderful dogs, I am shocked it’s only been 2 weeks. I spent 10 days tethered to a dog I didn’t know very well but whom I’ve come to love and trust completely, and while it sometimes feels as if he's always been a part of our family, at times I find myself looking at him in complete awe because he's finally here.

In closing, I would like to thank the Kids and Canines program for welcoming us in to their special family. I honestly feel like we have been given a gift more amazing than I ever could have dreamed, because I’ve been able to see first-hand what Nick has done for our family in just the short time he’s been with us. Laughter has replaced the tears, smiles are becoming commonplace, and the nightmares are starting to be replaced by peaceful dreams. I can start looking at my son and not be blinded by my fear for his future, because we have been given hope in the form of a 4-legged angel named Nick.

Back to School

Training has officially begun! I started the sessions at Kids and Canines on Monday, and I realized it is going to be a much different experience than I thought it was going to be. I'm not sure where I got the idea we would just be working on commands and seeing what the dogs could do for the two weeks I'm scheduled to be there, but I was obviously wrong. While we do a lot of that, of course, there is so much more. We have lectures ranging from how the dogs learn to how we teach them, and we as handlers are actually the ones being trained when we go over the commands. If nothing else, I've learned that the dogs we are working with are much, much smarter than I gave them credit for, and their devotion to their jobs is one of the most amazing things I've ever seen.

The first day was pretty amazing, but yesterday was really something. We are at the stage where the dog is now basically attached to us during the day, and as we were wrapping up yesterday's lectures, Nick was laying under the table napping on my feet. The door to the room opened, and the family that's been raising him walked in to pick him up for the last time. The two staff members who run the program wanted to see what would happen, so we all sat back and waited to see what Nick would do.

At first he didn't even lift his head, but after a moment he looked to see who had come in. The raisers started talking, and at the sound of their voices Nick looked up at me, then lay his head back down on my feet. We waited a bit longer, and then the staff told them to call him over. He wagged his tail, looked at me, and then put his head back down until I told him to go ahead. At that he looked at me again, stood up, gave me another look, and then trotted over to the little girl in the family. However, once he gave her a kiss, he turned around without a word from me and made his way back to lay under the table again!

I can't even explain to you what that felt like. It was as if this wonderful creature was telling me that he knows how much we need him, and he is willing to let go of everything he has ever known and loved in order to do his job. He is trusting that I will provide him with what he needs, and in return he is going to do whatever it is we need him to. This amazing dog is going to change our lives, and I have to keep reminding myself that it is real.

The bond is there. It's happening.

The End Is In Sight!

After months (and months, and months, and months), we are finally able to see the finish line! Ian has the date firmly imprinted in his mind, and he keeps a countdown running of when the 'official' ceremony happens and Nick becomes his dog rather than the dog I am waiting for.

Nick visited us the second weekend in April, and this time I could see without the clouded judgment of a mother's love that there is an obvious bond between my little boy and his trusted dog. When one of the volunteers brought Nick outside of the gate surrounding the training facility, the minute Ian called his name, Nick's tail started, and his bounce got even bigger. There was not a moment's hesitation when asked to jump into the back of the SUV, and as soon as I closed the back of the truck, he climbed into Ian's seat so that he could sit behind him.

The weekend was fantastic as you can imagine, and once again Ian was asleep by 8:30 and stayed in his room all night. There was no running into our room because of hearing strange noises or asking if we were calling his name, and he didn't do his usual up-and-down-the-stairs ritual either. He slept well, and he was up taking care of his best friend by 7 a.m. both Saturday and Sunday morning.

It was a joy to watch them together, and amazingly our child who can spend hours on the computer spent most of his time playing outside with Nick. They played with the hose, sticks, balls, and they even played some strange game that was a cross between tag and hide-and-seek :-D

Weekend mornings are usually hit-or-miss at our house. The majority of the time Ian will get up about 10 a.m., grab something to drink, and then retreat back into the darkness of his room. It's hard to get him to leave the house, and usually there's a meltdown involved before we go. These can result from even the simplest of things like brushing his teeth to the more complex issue of taking his medication, but there's usually at least one thing that will send him into a tailspin. (As you can see below, he has quite a few medications to take, and he gets frustrated sometimes. Understandable.)

 

Even though it's better than it was even a year ago, we still have our struggles, but when Nick is here, it's usually much better. For instance, this is what happened the last weekend he was here, and it made me and Sean laugh right along with them.

 

As you can see, just about everything is a lot brighter with Nick in the house. We are all anxiously awaiting the day we can bring him home for good, and it's only 23 days (and a few dollars) away!!!!

Weekend Bliss

We were able to have Nick visit the first and last weekend of spring break, and it was wonderful! He attached himself to Ian like a burr, and Ian was lit up from the inside out from the moment he saw him. Luckily I was able to arrange with the principal of the school to have Nick on the property when I picked him up (dogs aren't allowed), so he was surprised to say the least :-)

We were able to see Nick in action when Ian had a meltdown the first Sunday morning he was here, and I am excited to report that Ian's usual hours-long episode lasted... wait for it... seven minutes. That's MINUTES!!! I almost cried when in the midst of Ian's outburst I could see his eyes come back into focus the minute Nick leaned against him, and when he buried his face into Nick's neck and started putting words to his feelings, my very soul wept with relief. It's as if I had access to my son in a way I haven't been able to before, and I can only say it felt as if we were experiencing a true miracle.

We spent both weekends doing dog-friendly family things, and we had such a wonderful, relaxed time. There were no tantrums, no obsessive behaviors to handle, and no negative spirals at all. Ian was as close to a "typical" 10-year-old boy as I've ever seen him, and even his therapist mentioned again that when he has Nick, he appears more relaxed and confident. He interacts, makes eyes contact more, and even his voice is stronger. He isn't afraid, and he feels like he has a safe place in this world when his friend is there beside him. What parent could ask for more than that?!


Here we are after Reilly's soccer game:

As you can see, Nick is clearly bothered by the activity at the restaurant:

By the end of the weekend, Nick insisted on being ON the seat with Ian :-)

Once again, we would like to thank each and every one of you who has donated. You constantly amaze us with your support both monetarily and emotionally, and we know this journey could not be traveled without each of you. Thank you, from the deepest part of our souls, and know that you have made a big difference in a little boy's life.

Accepted!

We got our acceptance letter from Kids and Canines last weekend! Ian was beyond excited, though in his words, "I just knew it." Although I prayed and hoped and felt like we were going to be asked to participate in the training, getting the letter means we have jumped over another hurdle and I can breathe a fraction of an inch easier. While we haven't been "guaranteed" the placement of Nick, we are first in line.

What does all this mean? It means two weeks of intensive training in May, Monday through Saturday. I'll be the primary person in the training so I can become certified to have Nick in public places, and depending on Ian's schedule, he will be involved as much as possible. This also means that our family is coming forward to help with the kids, and for that I am beyond thankful. If it wasn't for them this wouldn't be possible, because training is from 8 a.m. to 5 p.m. While I would love to put the kids in an after-school program for those two weeks, it just isn't possible due to therapy and doctor appointments, so once again the whole, "It takes a village" comes into play.

We are one step closer!!

Education and Understanding.

I posted the above picture on my Facebook wall the other day along with the comment "For the people who ask why I "can't control" my 10-year-old or why I don't "beat the tantrum" out of him..."

You see, I used to be one of the parents who rolled their eyes when a child acted out in a restaurant. Or in a store. Or anywhere near me, actually. I'm not proud of that, but I was young, and I didn't have any experience or exposure to a lot of children. I had the thought that I would never have a child that acted in such a way. No would mean no, and my children would learn at an early age that there were certain behaviors that were absolutely unacceptable, tantrums being one of them.

Well, here I am now, and my entire outlook has changed. Not only did the act of having a child change my view once the reality of welcoming an actual person with their own personality into my life hit me, but I have also learned that nothing about a child's behavior is predictable, Autism or not. While any child's tantrum is unnerving and unsettling, the complications when a child with Autism experiences one is heartbreaking. There is no distraction. There is no "wait it out," and there is no way to stop it by "giving in," because their meltdowns don't have a goal. These children are overwhelmed. They are on sensory overload most times, and where a typical child can eventually learn coping mechanisms, these children cannot. They are stuck in a world where oftentimes what is a normal, everyday occurrence for most  of us is unbearable for them, and as parents, all we can do is learn our child's triggers and try to avoid them, do our best to keep them safe if they do get to the meltdown phase, and then hold on tight until it's over. It's gut-wrenching to live through, and it's even more upsetting when it happens in public. In my own personal experience I haven't had to deal with too many people making comments, but I have experienced the eye-rolls and the deep sighs on almost every occasion. I'm okay with it, because I was there once. I was ignorant, and I expect most of those people expressing their exacerbation haven't been exposed to children with unseen disabilities.

Part of this blog's purpose is to offer a donation opportunity to people looking for ways to help our son get his service dog, but another is to offer an inner look into our lives. Autism is nothing to be feared, but it is widely misunderstood, especially since the people diagnosed differ so much in their abilities. Ian is considered high functioning, but there are some days and even weeks where he slips back into behavior very reminiscent of his earlier years pre-diagnosis. Most people who meet him think he's a typically-abled child, but for those who have known him and loved him for years, they see what goes on behind closed doors. They see this bright-eyed child lose control in a flash, and some have even witnessed the hours of sobbing and screaming that happen. They have heard our anger, listened to our fears, and they have sat with us while we cried (okay, that's mostly me, and I try to do it behind closed doors). They know about the therapies, the physicians, the  two-hour hearing aid appointments. They are privy to my frustration over insurance and school issues, and they are aware of his confusion and anger over the constant doctors and large amounts of medication.

Anyway, my point is, there is so much more going on than what most people see. These children are amazing and wonderful and challenging, yet they live in another reality than the one we do. Sometimes they get overwhelmed, and when they finally end up melting down because they can't process it anymore, there is nothing we can do no matter how much we want to! I consider my family lucky in that we were able to find something that works well for Ian (Nick, the service dog) because a lot of things coming out that seem to help (massages, heat stones, brushing, etc.), he cannot tolerate because of his sensory issues. A lot of families aren't that lucky. They are struggling, and they are afraid that they will never find a way to make their child feel safe and happy. That being said, please be tolerant when you see a child "throwing a tantrum" in public. Be kind, be supportive, and be forgiving.  However, if you find that is too much to ask and you can't, then at least be quiet and keep your opinions to yourself.

One of my friends whom I've known for over a decade on-line responded to my posted photo with this comment:   "You know, after getting to know more of your struggles and others' over the last few years I've looked at other children's public tantrums in a new light. Something that used to annoy me I now look at with a different attitude. You never know what that child 's history is." If I could have reached through the computer and hugged her, I would have. By knowing Ian's story, it's changed her outlook, and I couldn't be happier! I'm not quiet when it comes to Ian's diagnosis or our struggles, because I hope that in some way, we can make a difference. Education and enlightenment can change things for the better, and if I can help bring a greater understanding to even one person, it's worth it! 

Wisdom

Sometimes I forget that there is a real, live person inside my son. That probably sounds impossible (or at the very least, strange for a mother to admit), but the truth is that I can get so caught up in helping him learn and develop so he can be independent some day, I forget that there is a personality in that body that is just him. It's something that cannot and will not be altered, and every time it makes an appearance, I'm beyond thankful that it refuses to be silenced.

Today he asked me what his sister and I did today.
Ian- "But what did you do?"
Me- "Nothing. She was sick, so we did nothing. Really, I did nothing."
Ian- "It's impossible to do nothing, Mom."
Me (thinking)- "Okay, well, I did stuff like laundry, but it felt like I did nothing."
Ian- "If you can't actually do nothing, that means that you are always doing something. So, if you're always doing something, why not make sure that something is important? Actually, everything you do means something, Mom, so don't say you did nothing. That isn't true."

Unfamiliar Territory

Yesterday was not a great day.

When I went to pick Ian up from school to take him to his GI appointment, I was told that his violin teacher had been in a severe car accident. Thankfully one of the teachers who knows Ian well stopped us to give us a bit more information, because she understands that he needs a bit more detail in order to process information, but I could tell from the moment I saw him that his world was in turmoil.

Question after question followed, and his agitation grew each time I failed at answering them. I watched in the rearview mirror as he squirmed in his seat, and I could tell he was trying to control himself even as his tics grew more pronounced and he started ripping at his fingernails. Distraction didn't work (it never does, but I was desperate), and even in the waiting room at the doctor's office, he repeated the same questions and continued asking them through the examination.

You see, Ian needs order. He needs predictability, routine, and a sense of what-comes-next. When something happens to derail that, it's like the one loose thread of his reality is pulled, and it all starts to unravel around him. In this case, when he heard about the teacher whom he adores and respects, he was devastated. As he started to process the information and what her injuries may mean, it occurred to him that there would be no more violin lessons on Fridays. Music classes would be conducted differently and taught by a different teacher, the spring concert may have to be cancelled, and there would be no music presentation this  month. Everything was going to be different, and no matter which way he asked his questions, there were no answers. There are no answers because we just don't know, and he is panic-stricken in a way most people cannot understand.

He was able to come home after his appointment in a relatively controlled state, and he went straight to his guinea pig to hold her. I praised him repeatedly for using a coping strategy, but I could tell he was still struggling. He held Zelda for twenty minutes, and then he asked his sister to watch TV with him while laying on his back. I found this surprising (in a good way), because one of the strategies they use with Nick is to have him lay across Ian's legs and lean against his torso. It has immediate results in Ian's behavior, so I was amazed he recognized that and tried to implement the same sensation the best way he knew how.

However, the night went downhill from there, and it ended with a complete breakdown. One of the very unfortunate aspects of ASDs is the inability to verbalize feelings, and that was our battle last night. I know he was angry, confused, sad, and scared, but without being able to use those words, we couldn't react the way he needed us to at the time he was feeling specific emotions. He can't voice what he feels or what he needs, so as parents, it's all guesswork. We just do the best we can, and when it gets to the point it did last night, we just have to keep him safe. His frustration builds to a point he can't control himself any longer, and we just have to hang on tight and wait it out.

Nick will be trained to Ian's specific triggers, and he will eventually learn his behaviors so episodes like this will be kept to a minimum. He will be able to "sense" Ian's anxiety so that he can act before he gets to such an agitated state, and hopefully by keeping Ian calm, we can start implementing coping tools to get him through whatever stressor we're facing. Unfortunately, we're at a point right now where he can derail too quickly, and sometimes we're forced to just survive moment by moment.

We do have high hopes for the changes Nick will bring to our family, and once again we would like to thank everyone for their support and encouragement. We couldn't do it without all of you!

Do I Have Autism?

It takes me 6 minutes to drive Ian to school, 9 if I happen to hit the red light at the intersection. It's usually a ride filled with a lot of laughter, a lot of talking about the sky, and there is the occasional argument between Ian and his little sister, snappy conversations between Ian and me, or what I like to call 'loud discussions' between the three of us.

Wednesday morning was no different... Until we pulled out onto the main road, that is. Ian was behind me, flipping through some papers, and I heard him muttering something.

"What's that, hon?" I called back to him as I pulled onto the road bordered by orange groves and pointed out the pink in the sky. "I couldn't hear you."

"Do I have ah... ah... um, au...? You know, that word I hear you say sometimes?"

I literally felt the world stop turning for a heartbeat as my stomach dropped. I knew exactly what word he was referring to. "Autism?"

"Yeah," he said quietly. "Do I have autism?"

I looked in the rear view mirror to see his deep brown eyes looking back at me, and I smiled at him. "Yes, you do. We've talked about it before. Do you remember?"

He looked down at the papers he was holding, and I saw it was a special brochure I had picked up at his therapy appointment. It was full of listings for agencies that specialize in working with special needs clients, and I hadn't even gotten a chance to look through it. In fact, I had forgotten it was there.

"Why do you need this? You said that I was just wired differently from other people, but this is a whole book about people that 'help' people with autism. Why do I need help? Is there something wrong with me?"

I had four minutes left until pulling up to the school, and I contemplated just driving past and coming back home so I could talk to him. We have never kept anything a secret, and we are as open and honest as we can be without overwhelming him with information he cannot possibly process. He asks questions and we answer him, but in that moment I wondered if we hadn't done enough to assure him that he is perfect just the way he is.

So, I jumped in with both feet because I didn't have any other choice. "'Help' doesn't mean anything bad. 'Helping' can mean something as simple as showing a friend how to sound out a word they don't know, right? Well, helping someone with autism just means that we have to do things a little differently sometimes. We need to teach you things that every person needs to learn, but you have a different way of learning those things than a lot of other people. You are so amazing, so unique, that people have to take special classes just to learn how to teach you correctly. Isn't that something?"

He was quiet, and I wondered if he could possibly understand what I was trying to say. I have always told him that his 'wiring' is just altered from other peoples' and there is absolutely nothing wrong with that. I have explained to him that some things might be more difficult for him, but that doesn't make him 'strange' or 'wrong,' and I have constantly reminded him that he is never a burden even when we get frustrated with something that's happening (yes, he does sometimes ask us if he's ruined our day, and he frequently apologizes for 'being a jerk' or 'hard to deal with'). I have used the word autism before, but in that moment I wondered if perhaps he didn't really grasp the term and hadn't been able to absorb what we have been telling him all this time.

"So, I have it then? I have Autism."

"Yes, you do, buddy. Do you have any more questions?"

He smiled at me, and shook his head. "Nah. It's okay. I guess I'm pretty special, huh?"

He couldn't possibly know how right he is!!!!

Perception

It's all about perception. When you watch the news or read the paper in the morning, what do you see? Usually it's murder, robbery, people dying... Sure there are good topics thrown in here and there, but on the whole we are privy to the worst aspects of the human race. Sometimes you can't help but feel overwhelmed and hopeless about the world we live in, and that's no surprise considering we get to hear about the worst of the worst.

However, as I am (thankfully) reminded daily, there are wonderful people out there. I look at the donations we're receiving and think back to all the amazing, kind words of support we have gotten, and I'm overwhelmed by the good in people.

Sometimes we forget that there are also wonderful companies that exist, and during a time when you hear about corruption and greed more than you do about support and morality, it's wonderful to hear about a company that's willing to step up and offer help. We were lucky enough to speak to someone from such a company today, and their offer was so genuine, it reminded me that the good is so much more prevalent than the evils we are so used to hearing about.

When I can, I will share the name of this wonderful business, but that won't be until we fine-tune some things. Until then, I hope they know how much we appreciate their support and how thankful we are.

Love,
Our Family

Happy New Year

We tried to distract Ian by taking him to an event at the local zoo when we returned Nick to the family raising him. He did pretty well, but he was definitely affected. It was hard for him to keep on task, and he spoke nonstop through the whole experience. We had hoped he would be exhausted by the time we got home, but unfortunately the nighttime wandering and pacing up and down the stairs started that very night. We were ready for it, but it's still upsetting to watch him struggling to adjust.   

That being said, he's doing pretty well right now, and we're looking forward to a fun few days before school starts again. Happy New Year, and may 2014 bring you abundant blessings!

Love,
Our Family