Saturday, March 17, 2012

"I've Got You Under My Skin"





Having the never ending hope I have for my child’s future, is what motivates me to get him as much help as I can.  By nature I am a very private, solitary person, and my home is a very sacred place to me.  When Regional Center first approached me with the idea of in home services, I can tell you I had some reservations.  I spoke to some friends who had received in home services for their child, and said that they were really beneficial.  Like wise it has always been difficult for me to accept help.  I feel very indentured to people after they help me, even if I have helped them in the past.  It is not that people try to make me feel this way, it is just my natural reaction to being helped.  I have had to learn to accept strangers in my home, and have learned to accept help when offered.  These are the things I can do for Holden, that are in my power.  However in a lot of ways Holden is very fortunate to possess some qualities of his own that have greatly benefited his plight.


For one thing Holden is very cute.  I have no problem as a parent saying this, because it is not just my biased opinion.  Even people who have never met Holden, but only seen pictures of him, think he is super cute.  In person he is even cuter yet.  Trust me, as his parent this isn’t always a benefit, because it is so hard to get mad at him, and even harder to combat behaviour issues by holding your ground, while this cute little kid gets so upset.  When Holden pouts and gets teary eyed, forget it man, I am jello in his hands.  What it has done for him, is gotten people to really want to get involve with his life, and help him in any way they can.  From people who meet him for the first time, and are very giving and cooperative to his odd little needs, like closing the door of a coffee shop, because he is obsessing on it being closed, to people who spend more time with him, and really want to see him progress.  I had a meeting with Holden’s teacher this week for parent teacher conferences.  His teacher had great things to say about Holden, but it was his one on one aid, who said “I have to say, I just love Holden so much.”  I could tell by the way she talked about him, that she truly enjoyed working with him, and was so proud of his progress.  She also commented that everyday there is something new to learn about Holden.  As a parent I can’t think of anything his one on one could have said to make me feel more happy.  You can’t buy that kind of commitment to a person.  I know plenty of people who work with developmentally disabled people, and they are all very patient, compassionate people, but they all have had their favorite clients.  It’s not the easiest, or the best behaved, but those ones that just touch a part of their soul, and forever have a place in it.  Holden touches people that way.


Certainly part of it is his cuteness, but that is not the only thing.  There is a depth of thought, and a purpose of action behind Holden’s behaviours.  They are not random, or malicious, or prone towards violence, they are heart felt needs that he can’t always communicate verbally.  Anyone who has worked with Holden knows there is deep intelligence, thought, and logic behind his beautiful brown eyes.  There is so much going on in that mind, that most people who work with him are so intrigued to find out what makes him tick.  In the meeting with his teacher, she spoke of his intention, and wants.  How everything he does is motivated, and not random.  How fun it is to watch his trains of thought develop and unfold.  They have learned at his school, as I am learning at home, to give him so latitude when he is not being “compliant” because chances are there is something simple he wants to do as part of the process.  Something he needs to complete the cycle that he has foreseen in his mind.  Once again as a parent it is so incredible to have his educators see the same things I see in him.  To have the people who work with him as their job, appreciate him for the person he is behind the disability.  Then there are the people who have helped us out, out of a pure love for him, with no want for compensation, just a want to get to the child behind the autism.  These people have been wonderful, and helpful beyond words, and I am forever in debt to them.


Holden is also very affectionate.  He loves to give hugs and be tickled.  He loves to hold peoples hands, and snuggle with them.  He and I are very close, and I feel so fortunate every time he comes up and puts his arms around me, or rests his whole body against my back, and puts his head on my shoulder.  I feel so fortunate to have an autistic child that can not only bare being touched, but gets comfort from it.  A child that can be consoled with physical touch, when there are many autistic kids who can’t stand being touched.  They are to sensitive to this kind of sensory input.  


Lastly, Holden has a great sense of humour.  In order to know he has a sense of humour though, you have to truly know him.  He will have so much fun taking advantage of anyone who underestimates his abilities.  If you down play his intelligence, and comprehension of the world around him, he will toy with you solely for the sport of it.  Those of us who do know him well, are not so easily deceived by him, but often just as easily toyed with.  One of his funnest tricks to play, is to call someone by the wrong name.  He may initially make an innocent mistake, but once he sees the reaction he gets out of calling someone by the wrong name, he will continue to do it just for the reaction.  He used to love to call his aunt grandpa.  He would hear her pull into the garage, and say “Aunties home”, but as soon as she walked into the house he would say “Grandpa”.  


These are things you can’t make happen in an IEP meeting.  You can’t make a person feel a personal connection with someone, they just have to feel it.  All of his teachers would be dedicated to Holden’s well being, and do their best to help him no matter what.  There is still something more that happens when a person feels a personal connection with someone.  As for the people who have volunteered their time and energy for Holden, they wouldn't happen at all were it not for Holden himself.  I have never been the type of person that easily makes connections with others, and the few that I do connect with, we have very intense, meaningful friendships.  People are drawn to Holden, and he gets under their skin, and becomes a part of their soul.  The best part is, he doesn’t try to do it, it just happens.



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