Is he Autistic Enough??

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That seems like a pretty strange question, right?  Why would a mother ever wonder if her special needs child wasn’t “special” enough? 

     Believe it or not, that is exactly what I have been doing.  There have been a slew of events that have happened in the last month or so that have lead me to this question.  My son has Autism. Specifically labeled on the spectrum as high functioning Asperger Syndrome.  Most people don’t notice or are shocked to find out.  But I’ve known for a long time.  Matter-a-fact, I think I always knew!

     I’ve been working on putting together information about Asperger Syndrome and specifically how it affects Jackson.  I could go on and on about the fascinating amazing people I have learned about and the incredible talents and abilities they poses.  I wish that was all there was to say about it, but unfortunately the parts of Jackson’s Aspergers that I am obsessed with are the parts that make me sad.  It’s the parts that make life harder for him, that leave him in constant fear and worry, the parts that make him feel alone in a world filled with people that love him.  This is the part that breaks my heart into millions of pieces everyday and the area that I can’t help but obsess about the most. 

      Within this last year or so I have watched as Jackson’s AS symptoms have grown.  Unfortunately, my secret hope of him growing out of it was not going to happen.  I have seen his fears get worse, his imagination take over, his frustrations more intense, and his body seem to get weaker.  The reason why this is happening is because he knows more about fear, he has learned about so much to fuel his imagination, he has bigger issues to overcome and frustrate him, and his little body is growing faster than his muscles can keep up.  And the other problem is; as much as I had hoped… Children don’t grow out of Apergers, they grow with it. 

      Right now, Jackson is afraid to go to the bathroom by himself.  He is afraid to sleep in his own room, he cowers in fear if someone is teasingly threatening to tickle him, he describes having to write as boring torture, he covers his ears at loud noises, he gets hysterical if you don’t understand what he needs, he wants to be everybody’s friend but doesn’t feel like he has any at all, crowds and chaos overwhelm him to the point of it being physically painful to stay in the situation, and he still doesn’t understand sarcasm, facial expressions, or empathy.  At his worse he will hit and hurt himself in order to stop the confusion in his head, but most of the time it’s tears and fear that consume him.

       Everyday, I look into his eyes and I see sadness or fear that I work so hard to keep him from.  It breaks my heart into a million pieces when I feel as though I’m failing, that I’m missing something, that he needs MORE of me than the Everything I’m trying to give him. 

       And then something happened.  It started off with a HORRIBLE nightmare that had Jackson screaming in complete terror like something straight out of a horror movie.  I ran into his room and all he could say through his crocodile tears and fast beating heart was “I’m alone, I’m all alone”. 

       I had managed to get him asleep in his own bed by making Cameron (our dog) sleep in there with him.  Keeping all the lights on, door open, and working on my computer in his desk chair on the other side of the room.  But after he fell asleep Cameron and I both came into my room to finish up some work before bed.   There is no talking Cameron into sleeping in Jackson’s room with him.  She is 14 years old, having health issues of her own and has been my shadow her entire life.  I have never stepped foot into a room that she was not right behind me and there has never been a hard moment in my life that Cameron wasn’t right there knowing exactly what I needed.  She has earned her spot at the foot of my bed and I couldn’t possibly punish her at the end of her life by making her stay away. 

       That night after I got him calmed down and into my bed I started doing some research.  I ended up coming across information about Autism Assistance Dogs.  I had actually never heard of the concept and was fascinated by the idea.  I have always known how important an animal can be to people being an animal lover myself, but I had never heard of an animal specifically trained for children and their needs regarding Autism.  The more I learned the more my heart ached for this kind of connection for Jackson.  I emailed several organizations that did training and placement for these types of dogs. 

       I knew that there was no way I could actually get Jackson an animal like this.  These dogs are specifically trained from birth to do all kinds of different things for the children they are taking care of.  We are talking about 10 – 20 thousand dollar dogs.  But I just wanted more information.  I wanted to know what breeds were best for these types of situations?  What abilities or “tricks” are the animals able to provide for the children they were paired with?  I wrote to each and every one of them talking to them about Jackson, about his fears, about our home, about our animals…. I was honest about my financial situation and basically just wanted to know more, as much as I could, and then go from there. 

       It is not the first time in my life when I just couldn’t stop typing and I just “knew” there was a reason for me to do it.  That night a MIRACLE happened.  That night I met an Angel!!

       Ok, actually that night I heard about an angel, several actually!  A woman named Vicki who owns a company called Compassionate Paws said she had read my story and she thinks she has exactly what I need.  She told me about a dog that was 14 months old and has been trained her whole life for a little boy that has Aspergers.  The placement didn't happen for several unforeseen reasons; sad for the little boy but knowing that it was not the best home for the dog, Vicki let them walk away without sticking to the terms of their contract.

         The part of this story that makes it a miracle is that this particular boy was a “seeker”, like Jackson.   That means that unlike most kids with autism who do not particularly like to be touched; Jackson not only likes it, but needs it frequently.  This dog had been trained to know when his buddy is upset or nervous and to press up against him, to put her paw on him, or to lay across his body or legs.  She is trained in a way that if her buddy is lost and someone says his name she will search and find him anywhere, no matter what.   She is trained to bark if someone is calling his name trying to find the child and she is with him.  She is trained to sleep in the bed with the child as close to and snuggled up as much as the child needs.  The dog is completely insured and certified to be a service dog, meaning she is legally allowed to enter any and all facilities that the child might need her with him.  She has completed all obedience training along with all of her behavioral training.  This dog is a Great Pyrenees!  A large breed white dog that was historically bred to be a guard dog for sheep.  The incredibly unique trait regarding the Great Pyrenees is that unlike most dogs that will bond with the “Alfa” or the shepherd ( an adult in the family).  Great Pyrenees will bond with the creature that needs the most protecting; the sheep!  Or in this case the child that needs them the most!  The other amazingly beautiful and completely appropriate thing about this dog is her name.  Her name is Angel!!

        Vicki called to tell me she believed that it didn’t work out with the first family because Angel was meant to be with Jackson.  And from the very second I heard her name I believed it too!  She was willing to help me however she could to get Angel into my home and because the deposit had already been put down, because her training and certification was over, and because her heart was deeply touched by my story about my Snugglebug, Angel could be ours for a fraction of what she would normally cost.

        I was ecstatic, I was crying, I was FREAKING OUT!!  I talked to my friend Diane who trains animals for a living.  She has witnessed amazing things happen between animals and children.  A child that had been mute for 17 years due to abuse saying his first words to the horse he connected with.  Children finding independence, security, and confidence with their new best friend beside them.  The one person in the world that seems to know exactly what they need, how they feel, and how to react to it.   When I told her “I don’t know why but I just feel it in my heart that this is something meant to be.  That it’s something I have to do for Jackson”, her response was, “I feel it too”!  We knew that this amazing animal that seemed to be absolutely perfect for Jackson was worth SO much more than what they are asking and the joy, the relief, the amazing opportunities that she could offer to not only Jackson, but ALL of us, are immeasurable. 

        It was then that I called Vicki and told her I want Angel to be Jackson’s.  I want the two of them to walk together through the next ten to fifteen years because I believe that is exactly what was meant to be.   The cost is a stretch for me, but somehow I know God has a plan because every piece of my soul knows she will be a part of our family! 

    Three days later and I am filling out contracts and have March 2^nd as the date Jackson and I will fly up to meet his new best friend and his world, as we know it, will change forever.  When we get home Diane, Jackson, and Angel are going to work together every week to continue training and give Jackson the opportunity to teach, to master, to be humbled, to be in charge, and to accomplish amazing things through the training of his friend.   Jackson will not need Angel to be with him everywhere he goes, but if he needs her, she can be.  He will be comforted by the idea that this giant Angel would never let anything happen to him and will always understand what he needs and feels.  She will open up opportunities for him to find confidence, build relationships, and meet new people.  Because of her, his world will be a completely different place.  A place that isn’t lost inside his own head, but open to endless opportunities and experiences.   What Angel will provide for Jackson is Joy.  What she will provide for me is relief!  And I already know that I will be Forever Grateful.

        The original question of “Is he Autistic Enough” came from my fears of the outside world questioning why we would go to the extreme of getting a service dog.  That people would judge because they don’t see the negative parts of Jackson’s Aspergers the way I do.   They don’t hear the screaming at night, they don’t see the fear and sadness in his eyes, they don’t listen to him tell me about how he doesn’t belong, or have any friends.  Most people see Jackson in a structured situation.  In this kind of atmosphere, because he doesn’t have a wheelchair or a distinctive characteristic, he looks like any other six year old boy.   But they don’t know that at the drop of a hat, everything could change.  That I spend all of my time at parties and unstructured events with my eye on Jackson because he has been known to get easily overwhelmed and run. 

         There are multiple times in his life where something very small and insignificant has happened to him, but because of his lack of social understanding and of his heightened senses he doesn’t know any better than to run and hide.  Parties where we couldn’t find him anywhere, times where I was seconds away from calling the police, scary days when I would find him curled up in a ball on the floor board of a shut car in the 103 degree heat crying hysterically because someone said he did something that he didn’t actually do.  These moments are heavy on my heart every second of my life and couldn’t possibly be understood unless you have a child with similar special needs. 

       It took my friend Diane (who also has a child with some special needs) saying “forget what anyone else would think.  This is about you and Jackson.  This is about what you feel in your heart and nobody else can understand or make that decision for you”!  She reminded me to trust my mommy instincts, trust God and listen to my heart!   I know that there are other children out there that are so much more severe than Jackson is.   But that doesn’t mean that Jackson isn’t severe enough!  That doesn’t mean that because he could be MORE autistic than what he is that he doesn’t deserve a buddy that will help him get through the hardest years of his life. 

       So…..  Angel is going to be ours!   I have not figured out exactly how I will work out the finances yet, but my heart is telling me to pray about it, to open up about it, and to make it happen!  Jackson doesn’t know it yet, but on March 2^nd, 2013 his life with change forever…. And so will mine!  

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