Obviously I wouldn't wish Autism on anyone, especially an innocent child. There are so many challenges that come with it, some easier to handle then others depending on the severity of their struggles. Nothing would make me happier then to have not been told my child has Autism Spectrum Disorder. Hunter has taught our family so much in his three short years... we have learned to be less judgmental, more patient, more appreciative and more forgiving. We've learned to never judge a book by its cover, to understand the importance of routines and how it affects us when it is changed and to be careful in our approach to choosing our battles. I could go on for hours about how much he has taught us. Most importantly though we have learned that being diagnosed with Autism doesn't mean he is doomed and that all the dreams we had for him are now gone.
I might spontaneously jump at the opportunity to cure him if I could but when I sit down and actually think about it I am not so sure... If I cured him he may be different, our connection may be different... so much could change I think. Is being "normal" really all that it is cracked up to be? Perhaps it is for some things, but not everything in life. I definitely don't want him to struggle any longer but it isn't necessary for him to be "normal". I don't need him to change so society accepts him. Instead I will advocate for him and share his story. He has truly taught us what the meaning of love is and he is perfect just the way he is :) The Hunter I know could be gone. I want for him to learn every skill possible to be successful, so that it would appear he has been cured. But please don't take away the uniqueness he brings to our lives that comes with his Autism diagnosis. If they see fit to change his diagnosis that would be wonderful too of course.
I have incredible bonds with all three of my sons but Hunters is uniquely different. It's very hard to explain but those who have children with delays, disabilities or medical concerns know what I am trying to say. I am a better person because of him. He has brought so much to this world and to our lives. More then I ever could have imagined. His legacy, when he grows old and returns to the home in which he shared with God, will truly be that of an angel unaware. I love my son more then anything! He touches a very deep part of my heart and inner self. God only gives us what we can handle and I am learning to cope and handle what Hunter has brought to our lives. Don't get me wrong, it is definitely not easy and there are days when I sit and cry. Just when I thought I had him figured out something happens and we are facing another meltdown. That can be said about any child though, lol.
He has truly taught us what the meaning of love is and he is perfect just the way he is :) If they could assure me his inner spirit wouldn't ever change than of course I would cure him :) But it isn't necessary for him to successful. He's already moved mountains, which is more then I can say for many "normal" people.
Tuesday, November 16, 2010
I Love You ...
When your child says "I love you" you may get a hug, a high five, a look of "mom don't embarrass me in front of my friends", a gentle snuggle on the couch, a sloppy toddler kiss on the lips, a fast peck on the cheek, a split second glance with their eyes and sometimes no eye contact or words at all. But it IS an "I love you".. why? Because you feel it. Love is felt and sometimes not always seen but it IS there.
Sunday, November 14, 2010
Hunter struggling to communicate his needs...
This video was taken when Hunter was just under two years old. He wanted to get up onto the couch (he couldn't do it himself yet) and he wasn't able to find the words to let me know he wanted to get up on the couch. He was able to say "up" in general most times but in this situation he couldn't do it. And he didn't turn around facing the couch making an attempt to make it more obvious what he wanted. And after he saw the dog he had a blank stare (we know these to be sensory related and not seizures). He zones out for a bit. (He isn't looking at the TV you hear in the background). This is an example of a motor planning concern. He was unable to find words to communicate his needs.
6. The Diagnosis
When Hunter was nearly18 months old we met with a Developmental Pediatrician. I never even knew there was such a thing until a few months before his appointment. His team had spoken very highly of this doctor and told me that we should finally have peace of mind in knowing what was actually going on with him. They did however also prepare me by saying younger children who are suspected of Autism (if that is what it is) don't often get an early diagnosis so even if he suspects it he may not give it officially until a follow-up appointment perhaps. A Developmental Pediatrician is a doctor who is a specialist in this and would be the one who would know best what was going on. In the weeks leading up to this appointment I began to think more about the possibility of it being this. Even as I read more up on Autism I was still on the fence though. One thing that continued to baffle me was while he did have many struggles and symptoms, he also did many things I thought Autistic people/kids couldn't do. I would later understand that to be why it is called a spectrum disorder and it is common to see normal behavior along with some concerns when it is high functioning.
I was very nervous to go alone so was very grateful when my PT shared that she would be joining me. All morning, prior to his appointment, I was trembling inside, I was so nervous… It seemed like forever that we were awaiting this appointment and now it was finally here. The Developmental Doctor was great. He examined him thoroughly and carefully observed him. He played some games with him and asked many questions about his speech, eating, social interactions, eye contact, habits, routines etc. It was comforting to have my PT there as well because she was able to use the medical terms he was asking about to describe certain behaviors. Because Hunter had been in Early Intervention therapy for about a year we also had a lot of development documentation to provide, these would prove to be very beneficial to him. The more information you can provide the better the whole picture will be seen. Many have asked how he was able to be diagnosed so young, I always share that having professionals with him so early on and having a lot of written documentation from them made the world of difference.
Hunter had one of his blank stares while there which was also very helpful. I definitely described this concern with the doctor but seeing it in person made a bigger impact. This particular blank stare he did occurred when he was looking at a medical student also there, he wasn’t looking AT him though, he was looking through him. And both the doctor and medical student noticed it right away.
After the exam he left for a bit and then returned. He was extremely compassionate when he spoke to us about what it was that he thought. He drew two circles overlapping and wrote various things in them. One circle had various spectrum placements (PDD-NOS, Asperger’s, mild, moderate & Classic Autism). In the other circle he wrote developmental diagnoses that can show characteristics of Autism but are not on the spectrum. Where the circles overlapped he described how these concerns can overlap with Autistic kids. He then looked me in the eyes and gently shared that he was giving Hunter the diagnosis of Autism Spectrum Disorder.
I sat silently and expressionless and didn't move, I couldn’t move. The room around me disappeared and all I could see was him. He clearly was able to read my body language, that his job of course, because he followed it by saying, I feel you knew that already. I replied with a yes (I had figured it out when he began drawing the circles and was describing things that I knew were in the Autism circle and also seen in Hunter.) He said he was very optimistic about him and wanted to do a follow up in a year to see how he is doing and if the diagnosis still stands. I didn't say much after that, Hunters PT and I went out into the hallway of the building. Although I had prepared myself to hear the worst case scenario a part of me really didn't think it would be it. I was definitely in a state of shock. My heart was breaking but at the same time I was breathing a sigh of relief. We had been concerned for SO long and wondered for SO long what was going on and now we finally knew.
I never once questioned the diagnosis; I did as much reading as I could before and after that appointment and was in total agreement with his final opinion. Hunters PT hugged me and told me she was sorry and if there was anything she can do not to hesitate to ask. I will never forget her last words to me. They mean so much to me now as I've realized how TRUE her statement was. She said Hunter is mild and he will do great. And the expression on her face told me she was telling me the truth and not just saying it to make me feel better. She added that he will just have little quirks about him. She continued to share an example, she said he will still have friends; he will just have a smaller group of friends. That definitely made me feel better, there is definitely nothing wrong with that description. Then a couple hours later, out of the blue, she called me to see if I was ok. It took several days for the diagnosis to hit me, she knew that would happen and reached out to me knowing I would need her. She was not only helping my son, she was helping me. She wasn’t just a therapist for us; she was now becoming a dear friend.
I was very nervous to go alone so was very grateful when my PT shared that she would be joining me. All morning, prior to his appointment, I was trembling inside, I was so nervous… It seemed like forever that we were awaiting this appointment and now it was finally here. The Developmental Doctor was great. He examined him thoroughly and carefully observed him. He played some games with him and asked many questions about his speech, eating, social interactions, eye contact, habits, routines etc. It was comforting to have my PT there as well because she was able to use the medical terms he was asking about to describe certain behaviors. Because Hunter had been in Early Intervention therapy for about a year we also had a lot of development documentation to provide, these would prove to be very beneficial to him. The more information you can provide the better the whole picture will be seen. Many have asked how he was able to be diagnosed so young, I always share that having professionals with him so early on and having a lot of written documentation from them made the world of difference.
Hunter had one of his blank stares while there which was also very helpful. I definitely described this concern with the doctor but seeing it in person made a bigger impact. This particular blank stare he did occurred when he was looking at a medical student also there, he wasn’t looking AT him though, he was looking through him. And both the doctor and medical student noticed it right away.
After the exam he left for a bit and then returned. He was extremely compassionate when he spoke to us about what it was that he thought. He drew two circles overlapping and wrote various things in them. One circle had various spectrum placements (PDD-NOS, Asperger’s, mild, moderate & Classic Autism). In the other circle he wrote developmental diagnoses that can show characteristics of Autism but are not on the spectrum. Where the circles overlapped he described how these concerns can overlap with Autistic kids. He then looked me in the eyes and gently shared that he was giving Hunter the diagnosis of Autism Spectrum Disorder.
I sat silently and expressionless and didn't move, I couldn’t move. The room around me disappeared and all I could see was him. He clearly was able to read my body language, that his job of course, because he followed it by saying, I feel you knew that already. I replied with a yes (I had figured it out when he began drawing the circles and was describing things that I knew were in the Autism circle and also seen in Hunter.) He said he was very optimistic about him and wanted to do a follow up in a year to see how he is doing and if the diagnosis still stands. I didn't say much after that, Hunters PT and I went out into the hallway of the building. Although I had prepared myself to hear the worst case scenario a part of me really didn't think it would be it. I was definitely in a state of shock. My heart was breaking but at the same time I was breathing a sigh of relief. We had been concerned for SO long and wondered for SO long what was going on and now we finally knew.
I never once questioned the diagnosis; I did as much reading as I could before and after that appointment and was in total agreement with his final opinion. Hunters PT hugged me and told me she was sorry and if there was anything she can do not to hesitate to ask. I will never forget her last words to me. They mean so much to me now as I've realized how TRUE her statement was. She said Hunter is mild and he will do great. And the expression on her face told me she was telling me the truth and not just saying it to make me feel better. She added that he will just have little quirks about him. She continued to share an example, she said he will still have friends; he will just have a smaller group of friends. That definitely made me feel better, there is definitely nothing wrong with that description. Then a couple hours later, out of the blue, she called me to see if I was ok. It took several days for the diagnosis to hit me, she knew that would happen and reached out to me knowing I would need her. She was not only helping my son, she was helping me. She wasn’t just a therapist for us; she was now becoming a dear friend.
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