Josie and Max

Josie, trying to get as far away from me as she can get.

I've been working with my neighbor's newly adopted dog, Josie. She's a fearful dog that has never been socialized, or at least, very little.

She is afraid of people, objects and other dogs. The first day I spent time with her, she kept her distance from me (in picture above), growling at me. This is normally how she handles stressful situations, as she has found that growling is pretty effective about keeping people away--until my recent visits, when I refused to leave the room. I sat on the couch some distance away but within her sight, and pretty soon, she stopped growling. I spent a lot of time throwing hot dogs at her, shortening the distance so that she would eventually come up to me. Pretty soon, she would come up to me asking for a hot dog, and then run back to her "safe spot." But it was progress!

It's very difficult getting her to go anywhere, as she thrashes against the end of the leash, trying to get away. But once she gets on pavement, she's fine, at least until we walk past a strange object, like a garbage can or a parked car. And then she thrashes all over again. It's pretty scary when she does that because I worry that the collar will slip off her head and I won't be able to get her to come back.

I've been coming over to come get Josie nearly every day and I bring her to my house for exposure to a different environment. The first day, she spent the time frozen in one spot, panting and shaking. I felt sorry for her but really don't know what else to do to help her. So I brought her back again the next time I was supposed to work with her, and this time, brought her bed along, and she laid down and took a little nap. Progress! :-)

That day, I took her for a car ride and brought her bed along. She promptly laid down in it. She seems to be ok with car rides, as long as she has her bed along. Otherwise, she just sits there and shakes. 

The last thing I did was I brought her to a park. While I can't say that she was super excited about going (she seemed confused, not sure if she's ever been to a park before), she did seem intrigued. I was super excited that there was no thrashing or trying to get away. In fact, she even led the way and left her mark there. :-) 

Oh so slowly, she is starting to wake up to the world. People would be very surprised to hear that Josie is only 9 months old--she acts like she's ten years old. Very low energy, likes to be left alone and take naps. 

She reminds me of Max, my own son, who has autism. Maybe that is why I feel so determined to get her socialized, or at least as socialized as I can get. I've been "exposing Max to the world" since Max was diagnosed at the age of three, and like Josie, he "thrashes against the leash" resisting and fighting anything that is new. It is discouraging, it is sad, and it breaks your heart. I always have my own fight going on inside when I see him pass up someone who offers friendship or kindness. It's really difficult to accept that this is just the way autism is. (Not to say that he can't make friends, but it's an extremely slow process and most people give up on him.)

And so Josie and Max are very much the same in this way. I use Josie as a "teaching tool" to Max what it looks like to always be afraid and not be willing to try new things. He does seem to understand how it's not good for Josie, but he has a hard time relating it to himself. Maybe one day he will see it too.

So, that is how I spend my time these days, and yes, I still love it. Every small step in progress that Josie takes towards feeling a little more comfortable with people invading her space, gives me a little more hope that one day, it will be the same for Max.

A therapy dog for Max

I had mentioned before in an earlier post that one of our goals for Max was to get him involved in our church's Youth Program, the EDGE program. He had attended one session and let's just say, it didn't go well. At all.

I got repeated texts from Dennis (who agreed to come with him for the first meeting) about how things were going, and the more dismal updates I got, the more I knew Max would not be going back. It was discouraging, to say in the least. I knew it was going to be hard for him but I didn't expect it to go so badly either.

Normally, we push our kids when we need to push. We push them through the hard things that they have to encounter. That's usually the "healthy" way to go, to teach your kids to not give up.

With autism, however, it's different. There are times you need to push and times you need not to push. It is tricky and it's all about timing. You have to know your child's limits very well. You have to be willing to push them as far as you know they can go (not how far they are comfortable going) but you also have to know when to not push. Those are times of waiting and exercising patience and understanding--and none of those things are easy to practice.

I used to think that working with autism was just forcing things to happen, to go plowing right ahead and to keep going until your kid gets used to the situation.  But I've learned that forcing Max through these things when he's not ready not only doesn't work, but it makes him worse. He shuts down and is unable to take anything in, which means no new information is being processed. All he knows is that things are happening way too fast to process, and that is when "autistic tendencies" (rocking, humming) tends to kick in as his way of coping.

I'll never forget when I took him to the playground inside the mall one day. I used to take him often, knowing that something was "different" about Max in some way but not knowing exactly what. He wasn't like the other toddlers that interacted with one another and the only thing I could think of was to just keep exposing him to the same interactions over and over.

So one day I set him down at my feet and he went off to sit by his favorite slide while I sat nearby on a bench with the other moms. How I envied these mothers who could relax and not worry about their children. They either sat down with a book (this is before cell phones took over the world) or conversed with the mom sitting next to them. I, on the other hand, never could take my eyes off of Max for a moment, as he always seemed to wander away.

But one day, I decided to try to be like the other moms. I took out my book that I had brought and tried to get absorbed in the story, sneaking peeks to check up on Max who played nearby, not necessarily with other children, but at least by himself.

All of a sudden, I heard this horrible screeching. It was coming from a child, but the screaming was not a normal scream. It was a scream of fear, and it never stopped. Pretty much every mother jumped to her feet, looking for her child, but somehow, I knew it was Max and I was right. I ran right over to him, thinking he must be terribly hurt or something, but to my surprise, he sat on the floor unhurt. He had a blank stare on his face as he screamed over and over. The children around him had given him wide girth, some looking afraid, others looking confused. I picked up Max and tried to console him, but he continued to scream. I put my face in front of his, calling his name and trying to get him to look at me, but it was as though he couldn't see me. I had no idea what was going on, what was causing him to scream, but I did the only thing I knew what to do: I got him out of there.

Max has not had such a dramatic episode since then, but he still reacts as if in a trance if he is overwhelmed for too long. Except instead of screaming, he rocks or just stops talking completely, looking angry and confused. The only information he takes in is how afraid he is feeling, and so, to him, every situation is "bad" since that is the way he perceived it (even if everyone was friendly.) Sometimes he rocks, sometimes he shuts down, other times he tries to scare people away by glaring and even growling. And so for this reason, I have humbly learned that not even me, his mother, can push Max beyond his limits.

So as I was getting these texts from Dennis, I knew that our goal wouldn't be met. But it is imperative that Max have sort of social connection to keep him socialized with the world. So what to do. I stopped making school lunches for a moment to pray to God for help for Max.

And then, I noticed Joey, who had been sitting at me feet, waiting for some scraps of food to fall on the floor. And suddenly, I knew what to do.

Joey would be Max's therapy dog.

It was perfect. Max and Joey had a great bond already. Max loved Joey to pieces and both Dennis and I have noticed how his confidence soars when he can show people his dog. Not only that, but Max relaxes with Joey around. It was a perfect solution.

I quickly Googled everything I could about therapy dogs and even ordered Joey a therapy vest. In those 10  minutes, I learned that any dog could be a therapy dog as long as he was trained for it. (Unlike service dogs, that need a special certificate.) With me going into dog training, this was a perfect opportunity for me to practice what I've learned!

So when Max came home, all upset like I knew he would be, I was ready. He stormed in the house, threw down his take-home papers on the couch and said, "I am NEVER going back to that group again!"

I just smiled at him. "Would you go back if Joey came with you?" I asked.

Max stopped and ever so slowly, a little smiled began to work on his face. And I knew we had our hook and bait.

I suppose it was a little presumptuous of me to order a therapy vest for Joey before getting permission from the church first. Let's just say it was a leap of faith. Somehow, I felt that this was God's answer to our problem. A promise that He would see us through this homeschooling endeavor.

At any rate, our priest said yes as well as the Faith Formation leaders. We have been working with both Max and Joey at the church when no one else is around, training Joey to learn how to sit and stay, and just basically be there for Max.

We have yet to attend our first class with Joey as Max's therapy dog--and he already has chewed through one of the straps on his vest, that darn dog.

Will this work? I really don't know. Like everything else we've tried, we will have to give it time and see if it works. But I'm very excited that this could be the bridge to socialization...

How it's going

A quick update on how things are going with homeschooling:

• Time for other things is very limited!
• I have found that my own time for my school (dog training) is nearly non-existant now. I am learning how to fit it in.
• Max knows how to memorize facts, but not necessarily understand them, which makes it a little tricky to know what he does and does not know.
• We got the book Temple Grandin, How the Girl who loved cows embraced Autism and changed the world today!
• My mom came over to tutor Max a little today, get a baseline for where he is and what she thinks we should work on. (She is a retired special ed teacher.)
• We have goals. One being that he will attend the church's youth group. He attended one and hated it (I knew he would.) But we have a plan to make the next time a little bit easier. I will let you know if it works!
• We are going to learn Sign Language! Everyone should know it!
• He is going to learn algebra! This is his dream, to know the intriguing "pi" formula.
• He is going to volunteer. This is still in the works. I will update in another blog post.

Most of all, he is happier. He is working harder here than I think he thought he would. He has learned that being home doesn't mean loafing off or taking as many breaks as he wants. Yet at the same time, it is flexible. If there are appointments that we need to go to, we can switch things around in school.

Overall, things are going well. There are challenges to be sure, and it's only been a week, but so far, we are happy.

The very hard decision to homeschool

Last weekend, we made the difficult decision to pull Max out of school and homeschool for this year. This won't be a post with a lot of information, as it is a difficult thing to explain and talk about but I will say that homeschooling isn't an easy decision. There are so many people out there that make it sound like the best thing ever--and the only good thing for your child--but I'm seeing that it's not that way for everyone, especially if it's a sudden transition from traditional schooling to homeschooling. Especially with autism.

Max has been regressing in a lot of areas that he had previously made progress on; we've noticed a steady decline since last year. It went on throughout the summer and intensified this fall. It went from emotional turmoil to severe tension headaches sending him to the nurse's office  nearly every day or sometimes we would just have to come get him. Stomach aches, listlessness, depression, talk of hopelessness. Of course, we did doctor visits and tried increasing anxiety medication. We even started bringing him to chiropractor to help him with his headaches (the chiropractor said his neck muscles were unbelievably tight.) Even his therapists were concerned with the dramatic change in Max; normally a happy and cheerful kid, who was always pale from lack of sleep, angry and worried.  It all stemmed from stress from school. It became apparent that the only way to lessen Max's stress would be to take him out of school completely. (There is more to this story but since this is a family blog that Max might read one day, I hesitate to say too much.)

Teachers and therapists, of course, thought I was making a huge mistake. They didn't make it easy, although,  I don't think they were trying to be difficult on purpose. They didn't know how difficult this decision was for me and didn't know how much I was fighting it. It takes a lot of sacrifice and rearranging your life to suddenly homeschool and the thought of taking on someone's education is scary. Dennis was not totally on board either at first, so that didn't make it any easier.

But it was one of those things where you feel like God is guiding the boat. He is steering you along despite rocky waters tossing you about. The more homeschooling came to mind, the more peace I felt about it--despite the fear and doubt that was always there. I just knew that homeschooling would be the way to get Max back on track again.

It was hard for his teachers, who worked so hard with us to make Max comfortable at school, to hear the "abrupt" decision to homeschool Max (it seemed abrupt to them, as I had only been thinking and praying about homeschooling but never mentioned it to them.) They threw a goodbye party on his last day, and made a big poster saying how much they would miss him. He had tossed the poster on the floor of his closet when he got home (in his defense, it was a hard day for him and I think he didn't want to think about it anymore) and we tacked it up to his wall. I told him that when people make things like cards and posters to say goodbye, we need to acknowledge it. We don't toss it on the floor.

There was a kid that had an especially hard time saying goodbye. This kid is also special needs with autism more severe than Max. The sudden goodbye was very hard for him and he was very angry about it. Of course, no one could explain the situation to him to make him understand. All he knew was his friend would suddenly be gone from his life. He screamed and cried and blocked the door, preventing Max from leaving. It was very traumatic for both him and Max.

So of course I feel terrible for making things so hard with pulling Max out; for his teachers feeling like the rug has been pulled out from beneath them with no warning, for the other students who don't understand that sometimes "life just happens" with no warning. For therapists that doubt and fear for Max's wellbeing and that homeschooling might make things worse.

Except for my mom, I have not heard one word of support from family and I won't lie, it's been really hard for me. I've had a lot of questions but absolutely no response from the answers I've given them.  It's been weird how people have been reacting.

But I'm reminded that this is about Max, not them. I can't waste my time and energy worrying about people and their feelings; they will have to just sit back and see that everything will be all right.

Because I am in the same boat with them; wondering if this is truly the right thing to do, wondering if I will somehow fail Max and his education, wondering if I'm going to make things worse. But I'm trusting the Captain, who's steering the boat and I'm sure that he will bring us back to calm waters again.

We just all have to trust Him.

PS

It's only been a week, but I'm happy to say that already we are seeing the old Max that we know; his confidence has come back and he's sleeping well again.

If all goes well this year and Max make some good progress, we plan to have him come back for his final year at school (it only goes to the 8th grade) so he can graduate with his classmates.

Letting Nature Teach Us

A strange thing happened the other day. God broke His finger through the heavenly clouds and reached down to touch my heart in a special way. Or at least, that's how it seemed.

I was in the middle of making supper when suddenly, without really knowing why, I felt prompted to go outside to look for a baby bird. Not even thinking about the strangeness of it all, I left everything half cooked and went out to the front yard. Then, as though an invisible hand reached down from heaven and turned my head to the left, and to my surprise, I suddenly saw a little baby bird.

My first reaction was one of surprise that there actually was a baby bird there, and then I felt dismay. I love animals but get nervous with anything that is helpless. I knew that the best I could do for this baby bird was to put it back into its nest and hope that the mother would come back for it.

After getting some help from a neighbor to help me with the ladder, we put the bird back into his nest, only for him to "fall" out again. "I think it's time," our neighbor said. "He's learning to fly. Not much we can do for it but let nature take care of it."

I didn't like this plan at all. I knew I wouldn't be able to focus on anything with a helpless baby bird hopping around our front yard. I worried our dog might get it. Or that one of the kids would accidentally step on it. Or that it would hop into the street and get run over.  But, like our neighbor said, we had to leave the bird to nature and allow it to run its course.

Still, I hovered by the window, watching for several minutes to see what would happen to the little bird who seemed content to sleep on our lawn. And to my amazement, I realized his parents had not abandoned it or forgotten their baby, but had been watching over it a short distance away, even coming often to bring it snacks.

"Perhaps this is why I felt compelled to look for a baby bird," I thought to myself. "Maybe God wanted to show me how He takes care of His own."  I still kept an eye out for the bird throughout the day though, as it alternated between sleeping and exploring its new surroundings. Only once did I have to run out to the street to save it from being ran over.

The day passed on uneventfully, and pretty soon, even the little bird was forgotten. We ended the day with going to Mass as we always do. But then I was in for my second surprise of the day.

Max, our twelve year old who altar serves, got the schedule for altar serving and was shocked to find an increase of altar servers on the list. On our way home from Mass, he worried and fretted, working himself into a frenzy of questions: "Who are all these people? Where did they come from?? Why are there so many names?? I don't think I should altar serve anymore. I don't know what to do! What do I do?! Why do all these kids have to be on this list?!" And on and on.

Lately, Max has been showing more and more fears and anxiety over social situations, to the point where it's impossible to take him anywhere. I have found that except for altar serving--his one "social event", there is no group I can get him to join, no outing I can get him to come to. I can't even bring him to the store without him nearly having meltdowns. Even going to the park is no longer an option as the different kids "popping in and out of nowhere" is disconcerting to Max. I have found myself increasingly worried about Max, about what this road of inclusiveness will lead him in his life if we can't get control of his fears. As he ranted on and on about the list of names, I found myself getting impatient and finally angry. I told Max to stop it, get ahold of himself, stop obsessing. We both went to bed upset that night.

I laid in my bed crying that night, though I didn't know why. I wasn't sure where the anger was coming from. I wasn't sure if it was directed at me, Max or just autism. All I knew was that I was angry. And suddenly, the memory of the fear and anxiety I had felt over the little bird came to mind

Max, our altar server!

when I realized there was nothing I could do to help him. And suddenly I knew where the anger was coming from.

I'm so sorry Max. There is nothing I can do for you. You are going to a place I can't get to. I used to be able to soothe you, comfort you, scare your fears away. But I can't do it anymore. I can't help you.

There was nothing I could do but commit Max to the Lord. For the rest of the night, I slept restlessly, waking up often with Max on my mind, praying and begging God to help Max in a way that I couldn't and finally would fall back in a restless sleep, only to wake up later again praying.

The next morning I woke up and prepared myself for listening to another long talk from Max about his fears over the list of faceless names.  I tried to stow as much patience as I could, prepared my heart to not become anxious as I watched my son slip further and further into the puzzling world of autism.

But as we said our morning prayers together, Max threw me for a loop yet again and then went on to stun me speechless. Instead of listing off his fears to God as he usually does (which can make for a very long prayer), he said:

 "Dear Jesus, I am a little worried about all those kids that want to serve in altar serving. Where did they all come from, Lord? It used to be just me and a few other kids. But now, all these kids are suddenly wanting to serve too. But even though I'm scared, I'm happy too, because all those kids want to serve You. And that is really good. I'm happy that they love You so much that they all wanted to serve You. Please teach them to focus on serving You and not themselves. Teach them they are up there for You, to serve You. Help them to be good examples of what altar servers should be.  Amen."

I kept my eyes closed, not daring to make a sound during this prayer. Outwardly, I looked the same, instructing the next child that it was their turn to say their prayer, but inwardly, I was saying,

"Thank you, dear Jesus. Thank you for taking care of Max, my own little bird. For going into a place where I couldn't go. Thank you for helping Max deal with his fears. For helping him understand what altar serving is really about. Thank you."

We got up from prayer time and proceeded with our day, and the list of names was never mentioned again. Somehow, during the night, God took care of Max as I watched and prayed from a distance. Not being able to help him as I wanted, but leaving him in the hands of God. And God had proved once again that He is faithful, how He watches over His own. I didn't have to worry. Max was not alone as I feared.

Later that day, Luke came running in breathlessly. "Mom!" he gasped. "I found the little bird!"

I felt my heart contract as I prepared myself for the worst. "What happened?" I asked.

"It flew away! It was sitting on our grass and when I got to it, it flew away! It learned how to fly!"

I couldn't help smile at the ending of God's lesson. Point taken, Lord. I truly had nothing to worry about.