I don't know how to start writing this journal, so I just will. We took Harrison in for an Autism diagnosis yesterday. From the beginnning, I was pretty nervous about the whiole thing. The first person we met with was the pediatrician. She was pretty resolute about diagnosing him with Autism, although we still had to meet with the psychologist and speech pathologist. Everybody agreed that Harrison has challenges and characteristics that match those of Autistic children. The psychologist wasn't sure whether to diagnose him with PDD-NOS or Autism, but she also said that she would probably concur with the pediatrician. We didn't get an official word from the pediatrician, but my wife and I both agree hearing her say that she leaned more towards Autism. We have to wait a few weeks for the official paperwork, and I left with just about as many questions as when I arrived there. It was only yesterday, but the day is a blur of information, offices, and "ologists". After the first meeting (with the pediatrician), I went into the bathroom. I just had to be as alone as I could. The first dx came back more severe than I had thought. I had suspected for some time that Harrison did fall under the Autism Spectrum, but there's always been this small part of me that hoped that I missed something, that all the specialists missed something. Thinking about all this brought tears to my eyes. I felt horrible and guilty. I felt as though I could have or should have done something different. Maybe if I had fed him better or differently, this wouldn't be happening. If I had worked with him just a little bit more, this wouldn't be happening. In a way, I knew this was happening, but when the reality or actuality of it slaps me in the face, it awakened a sense in me that this IS happening to my little boy, and he still is my little boy. I hate hearing the term "lost possibilities," especially when it's used to describe my son. There are no lost possibilities, just different ones. He is no less my son because of all this. None of this changed my initial sadness or guilt when I stood there in that hospital bathroom. I'm glad nobody came in while I was in there. I didn't want to share my tears with anybody at that moment. I think my wife knew when I came back to the waiting room, but knowing me, she just gave me a little more time before talking to me about what might happen next. After processing my thoughts, my sadness grew to anger. I know these people have the best intentions, but who are they to tell me what my son will and will not be able to do. NOBODY will tell me this. Nobody will lay out my son's future. That is something me and my son will decide together. The new sense I just spoke of is, I think, a sense of purpose. I wil bring him back to that clinic in a year, and it's my goal to show these people that they're wrong. They don't know my little boy, and if I do anything in the next year, it's to get my son past his difficulties, so he will be just as much of a stranger then as he is to them now. I'm not doing this for my glory but rather for my son's. HE is the reason I'm doing this. People have already asked me what I'm going to do next because of this. My answer to them is simple: nothing different. I am going to keep loving my son and giving him all the possibilities he deserves: the world. I'm still just sad about this.
Replies
I\'m here for you. I went through the same things when we got Abby\'s diagnosis. You have to grieve, be angry, sad etc and then in time you get past it and come to accept everything. There is a hope for him to lead a normal life. If you read my last journal entry I mention the book \"Let me hear you voice\" by Catherine Maurice. I think this would be a great book for you to read. It shows there is hope. I am reading it now and it shows me there is hope for Abby and that it can be done. This book is a true story not just something made up. If it could happen for this family it can happen for yours and mine. If you need anything please let me know, but do read this book. It will help you see the light at the end of the tunnel. It did me.
awww Hon I am here for you as well. Twice I had the sadness, to feel guilty then the anger. It is all part of the grieving that we go through as parents with children on the spectrum. Our children will have successful lives, because we are their parents are working so hard to see that it happens. You are one awesome Father and someone that I am honored to have the privledge of knowing...even if it is via the net!Hugs to you, I am here if you just need someone to listen. Mary~
Hi. I sent you a long message! But I also wanted to thank you for sharing this with us. We have been through it and we understand!
MYJOY
Your journal entry just brought back a lot of anxious memories for me. You are going through a very difficult time and there is no getting around it, but you are facing this with a good attitude and your family will be fine.
I don\'t know who is telling you things about \"lost possibilities\"... that\'s just silly and pointless. You are right, nobody can tell you about possibilities. Nobody knows. I will say it again \"When you\'ve met one child with autism, you\'ve met one child with autism\". They are all different, the spectrum is not linear, it\'s not perfect, it\'s not absolute...every one of us is different, why shouldn\'t autistics be just as varied? One diagnosis vs. another... that doesn\'t matter, either. Imagine if your son was \"normal\"...think of all the ways you would never have grown as a person...think of how you have changed for the better because of your son. I believe autism is genetic, there is nothing you could have done to prevent it, and there is no good in thinking along those lines anyway.
Your son is lucky to be yours, and you are lucky to have him. Don\'t forget that.
I went through a similar experience. It\'s normal to feel a sense of loss but, with time, that feeling diminishes and you\'ll see that while Harrison develops differently he does develop and change. The DX is just a label and (on the positive side) perhaps opens doors to services. You\'re right in that you will continue to be the best advocate and most knowledgeable - I\'ve found this to be true with every expert we\'ve encountered. Use these sessions as a pulse check but never let them be the final definition or arbiter. I know Harrison, like Sacha, will show tremendous progress. For starters, he has you for a dad. All the best.
Keep fighting for your son. There are pre school programs out there that he can get into, in the public school system. It starts with three year olds, it\'s usually pretty limited so start early. Show the schools your sons diganosis, that will usually be enough to ensure a spot. These classes will give him the chance to have one on one time in a small class room setting and prepare him for Kindergarten. There is usually no cost and it does a world of good. These are special needs classes. But dont let the name scare you. Allow him to spend one year in these classes. Work with him at home as well, any chance you get. The next year the school will do an evaluation...and what\'s called a AARD...Here they will determine if he\'s progressed and where he should be placed the next school term. As the parents, you have alot of say on where he\'s placed. Fight with everything you have for him to be placed in the Head Start Program. The previous year in the PPCD (Special Needs Program)Will automatically get him a spot in Head Start...Something thats very hard to do other wise. All the early intervention will help put him right on track with his age group when he\'s ready to start school. In the meantime, look for an ECI (Early Childhood Intervention) in your area. They provide free speech therapy, Occupational Therapy and other types of support that really helps out. Last school year they did an IQ test on the children in my sons class. A normal score is 90, he scored a 119. Early Intervention Helps! No matter where your son is in the spectrum, there is still so much that can be done to change it. By the way...we\'ve been told that they may remove my sons Autism diganosis at his next evaluation...he\'s made that much progress in the three years since his first diganosis. Things can change. Dont let anyone tell you different.