Sometimes people with good intentions can really hurt you. This is something I've come to realize over the years dealing with Jack's Autism. People say well meaning things that are just so wrong.
It's hard to incorporate our extended family into our lives because we live 1,000s of miles away from everyone. Being in the military is both a blessing and curse- depending on the day. It's hard when people come to visit because they have no idea what to expect... And neither do we quite frankly... Sometimes it's no big deal and other times it can completely throw the little guy for a loop.
It's something I've had to deal with more frequently recently as more people have come to visit us. And it begs the question how much and what do you tell people before they arrive? Many of Jack's needs have to be addressed in ways that people who aren't familiar with Autism just don't understand. While my parents were here Jack had a huge meltdown with his tutor and they were both horrified to see that he was forced to continue what he was supposed to be doing- even through the screams, kicking, and tears. But having been in this situation for years now we know that is best and that it does indeed work. But it's hard to explain that to someone who is only here for a few days once a year.
In recent visits I've had people tell me the reasons why they think Jack's doing so well. But most the time they're just not right. It's a combination of several very intensive programs- not one single thing. And a lot of it falls on me. But it doesn't seem that people realize that. I find it hurtful and offensive for people to tell me that he's doing so well because of his school or his tutors... I guess maybe it's because of some insecurities within myself. I'm really not looking for a pat on the back all the time. But it sucks to never be acknowledged for the amount of work I do.
And then we get to the "cure" conversations. People saying that they're praying Jack will be healed. That he will be fixed. As if he is broken. I don't at all see it this way. Autism is a part of who he is. He would not be the same boy without the Autism. I would love him regardless. But I love him for who he is now. And I don't want to change that (sure, a few less tantrums would be great, but you get what I mean). I don't think that Jack will ever be "cured" and I don't want him to be. I want to equip him to be able to function in mainstream society to the best of his ability. But I don't want him to be like everyone else. I love each and every one of his quirks. I truly believe that taking away his Autism would alter who he fundamentally is. And I don't want that. I have no doubt in my mind that he will be able to be a happy, productive member of society, Autism and all.
So most of the time I find myself biting my lip. Holding back tears. And trying to just grin and bear it. I suppose a bigger person would try to explain it all to people but I just don't really feel that it is necessary. These are things that will be much more important someday when we live near our families but for now I'm just going to continue doing what we always do... Doing what's best for Jack and our family. Regardless how the rest of the world sees it.
Tuesday, May 10, 2011
Friday, March 4, 2011
Maybe I missed something...
While Jack was being diagnosed with Autism we were asked billions of questions about family history. No one in either my family or my husband's was ever diagnosed with Autism. But one of my brothers and all 4 of Jacob's brothers have ADHD. I suffered from depression, anxiety, and (although not diagnosed) obsessive compulsive behavior. Jacob too has had depression.
So I really thought that Autism came from a combination of all the complications of Jack's pregnancy. It was awful. My blood pressure was high from the beginning, fluid levels were dropping constantly, and at our 20 week ultra-sound it was discovered that Jack's kidneys were dilated. Because of all this we were going and getting high definition ultra sounds done at another hospital once a month. The final month of my pregnancy I was on bed rest. I had the steroid shots because no one thought he would make it to term. At 34 weeks we went for an ultrasound only to discover that my placenta was dead and Jack wasn't growing at all anymore. So I had an emergency c-section and Jack was born 6 weeks early weighing in at a whopping 4 pounds.
I have no idea what caused Jack's Autism. He never regressed, he just stopped keeping up with milestones, which leads me to believe it didn't have anything to do with vaccines (although I do think there is some validity to those arguments, I just don't agree that the vaccines 100% cause Autism).
Lately I've been doing some "soul searching." Lots of things in my life are not as I would like them to be. And I've found myself taking a good long stare in the mirror...
Sometimes my husband and I joke that maybe I have Aspergers.
Tonight I sat down and started researching the "signs" in adults with Aspergers. I actually found somewhere online that you can take a test (obviously not meant to be a diagnosis but merely a tool to use on your own). If you scored over 32 you could very well have high functioning Autism or Aspergers. I scored 36.
As I took the test I suddenly started pouring over the details of my childhood. I was OBSESSED with reading. I read all day, all night, all the time. Kids used to make fun of me for it. I had no desire to have friends. I just wanted to read and be in my own world. I was also obsessed with numbers. I have very vivid memories of laying in bed making up math equations based on whatever numbers were in the time (i.e. 2:24 would work out into all sorts of things like 2+2=4 but often more complicated than that). It was absolutely a self-soothing thing. I would put myself to sleep doing that and rubbing my feet together (which I also did whenever I got nervous) and quite frankly I still do. I was really good at math too. When I was in 4th grade we would do these multiplication tables and time ourselves as a class. I was so good that I actually had several "face-offs" with my teacher to see who could do them fastest. Sometimes she won, sometimes I did. I was reading Shakespeare for fun by sixth grade. And I had a photographic memory. I could recall scenes like photos in my brain. I also had a pretty narrow field of interest, I loved animals. I read every book in several series about horses. I was incredibly smart. But really awkward.
As I grew older I discovered that by becoming like the people I surrounded myself with I would be accepted. I began to mold myself into whatever group of friends I had at the time. Which often was a terrible thing (I was always drawn to the trouble makers, the kids on drugs, etc. Maybe because they were the easiest to fit in with?). But that's actually how I began making friends. And still to this day I find myself absolutely manipulated by whatever the people I hang out with are like. Right after we moved out here I had made a friend who was just a mess and a total drunk, sure enough a couple of months later I was a borderline alcoholic and a complete mess myself. Thankfully I was smart enough to stop that friendship and although I'm still a mess most days, I no longer drink...
Which leads me to where I am now. I don't have any friends. Quite frankly I prefer it. Friends are a hassle to me. The few people I was friends with since moving to Hawaii would come over and we would just sit in the living room of my house watching my kids. I really never had anything to say, and often just wanted them to leave. I find having "friends" online so much easier. They can't hassle you, they're there when you want them to be there. It's so much easier for me to handle answering an email than to have a conversation with someone. I like to piece together my thoughts methodically. If I don't, I often times sound like either an idiot or I'm rude.
All these things combined make me really think maybe I do have Aspergers...
Hmmm...
But it really doesn't matter. I am who I am. And no diagnosis could change that. It's just interesting...
So I really thought that Autism came from a combination of all the complications of Jack's pregnancy. It was awful. My blood pressure was high from the beginning, fluid levels were dropping constantly, and at our 20 week ultra-sound it was discovered that Jack's kidneys were dilated. Because of all this we were going and getting high definition ultra sounds done at another hospital once a month. The final month of my pregnancy I was on bed rest. I had the steroid shots because no one thought he would make it to term. At 34 weeks we went for an ultrasound only to discover that my placenta was dead and Jack wasn't growing at all anymore. So I had an emergency c-section and Jack was born 6 weeks early weighing in at a whopping 4 pounds.
I have no idea what caused Jack's Autism. He never regressed, he just stopped keeping up with milestones, which leads me to believe it didn't have anything to do with vaccines (although I do think there is some validity to those arguments, I just don't agree that the vaccines 100% cause Autism).
Lately I've been doing some "soul searching." Lots of things in my life are not as I would like them to be. And I've found myself taking a good long stare in the mirror...
Sometimes my husband and I joke that maybe I have Aspergers.
Tonight I sat down and started researching the "signs" in adults with Aspergers. I actually found somewhere online that you can take a test (obviously not meant to be a diagnosis but merely a tool to use on your own). If you scored over 32 you could very well have high functioning Autism or Aspergers. I scored 36.
As I took the test I suddenly started pouring over the details of my childhood. I was OBSESSED with reading. I read all day, all night, all the time. Kids used to make fun of me for it. I had no desire to have friends. I just wanted to read and be in my own world. I was also obsessed with numbers. I have very vivid memories of laying in bed making up math equations based on whatever numbers were in the time (i.e. 2:24 would work out into all sorts of things like 2+2=4 but often more complicated than that). It was absolutely a self-soothing thing. I would put myself to sleep doing that and rubbing my feet together (which I also did whenever I got nervous) and quite frankly I still do. I was really good at math too. When I was in 4th grade we would do these multiplication tables and time ourselves as a class. I was so good that I actually had several "face-offs" with my teacher to see who could do them fastest. Sometimes she won, sometimes I did. I was reading Shakespeare for fun by sixth grade. And I had a photographic memory. I could recall scenes like photos in my brain. I also had a pretty narrow field of interest, I loved animals. I read every book in several series about horses. I was incredibly smart. But really awkward.
As I grew older I discovered that by becoming like the people I surrounded myself with I would be accepted. I began to mold myself into whatever group of friends I had at the time. Which often was a terrible thing (I was always drawn to the trouble makers, the kids on drugs, etc. Maybe because they were the easiest to fit in with?). But that's actually how I began making friends. And still to this day I find myself absolutely manipulated by whatever the people I hang out with are like. Right after we moved out here I had made a friend who was just a mess and a total drunk, sure enough a couple of months later I was a borderline alcoholic and a complete mess myself. Thankfully I was smart enough to stop that friendship and although I'm still a mess most days, I no longer drink...
Which leads me to where I am now. I don't have any friends. Quite frankly I prefer it. Friends are a hassle to me. The few people I was friends with since moving to Hawaii would come over and we would just sit in the living room of my house watching my kids. I really never had anything to say, and often just wanted them to leave. I find having "friends" online so much easier. They can't hassle you, they're there when you want them to be there. It's so much easier for me to handle answering an email than to have a conversation with someone. I like to piece together my thoughts methodically. If I don't, I often times sound like either an idiot or I'm rude.
All these things combined make me really think maybe I do have Aspergers...
Hmmm...
But it really doesn't matter. I am who I am. And no diagnosis could change that. It's just interesting...
Tuesday, February 15, 2011
The Beginning
This is an excerpt from an email I wrote to a friend who was wondering how we knew about Jack's autism. Someday I'll elaborate on all this but I just wanted to get it out here for now.
I first began thinking something wasn't quite right around 6 months of age. I really didn't know, Jack was my first kid so I thought I was just being crazy. He would do this thing where he would ball up his fists and shake his whole body. When I first saw it I was scared he was having seizures. But he wasn't. And the dr. said not to worry about it. As Jack got older he just didn't play with his toys like I thought he was supposed to. Instead he would put everything in perfectly straight lines and just stare at them. He wasn't very interested in toy cars, but when he did play with them he was fixated with their wheels, just watching them spin for long periods of time. He never looked us in the eyes, often just staring off behind us. He would zone out, sometimes staring at the wall, and be completely unaware of anything going on around him. Including us. We knew he could hear us calling him because often times noises would completely freak him out, sometimes noises we could hardly hear. It was entirely confusing. When we left DC my pediatrician kept telling me that they couldn't test for Autism until the age of two (at that point I had begun researching on the internet and was fairly certain that was what we were dealing with). Jack had only a couple words that he would say over and over and over again, didn't call us anything (no mommy or daddy), and spent much of his time alone playing by himself, lining his toys or his favorite, lining up all of his shoes perfectly in order by color.
After we got to Hawaii I was bound and determined to get some answers. After seeing several pediatricians at our clinic on base I was finally able to obtain the referral I needed to see a developmental pediatrician. The most wonderful and scary thing I had ever done. After all, this could mean that this was a reality. It took about a month, and about 4 meetings but we finally got the diagnosis- just as I suspected, Autism. At that point Jack had about 10 words but they weren't used correctly and often were just repeated over and over. He would echo us but very rarely used any sort of spontaneous language. It was hell at that point. At two years old kids absolutely know what they need and want and having no language or ability to convey it resulted in massive tantrums. Sometimes completely out of control. The day that cemented my reality actually came right before our final appointment when we received the diagnosis and we had been in the boys' bedroom and Jack went off. He screamed, hit, kicked, ripped at my clothes and face for close to an hour. I was home by myself so I had to put Liam in his crib (screaming because he was totally freaked out) and bear hug Jack so I could try to calm him. Eventually we both collapsed into a heap on the floor, him quietly crying in exhaustion and me crying out of complete defeat and desperation.
Once we got the diagnosis things took awhile but we hooked up with Early Intervention and had all sorts of assessments done. We found out that Jack was about 15 months developmentally (his highest score was 20 months and lowest about 10 months) at 25 months old. We immediately received a 'skills trainer' that came in each day for 2 hours and worked with Jack on everything from beginning to use sign language until he began gaining words to shapes, numbers, identifying objects and so on. We also got physical therapy, occupation therapy, a speech therapist, and a preschool teacher. We had a huge team but we were so lucky to have them because from there we were able to pin point what we needed to do and how to do it.
It was a long road (which we're still very much on- and always will be) and things always get worse before they get better. But today Jack is an incredibly brilliant 3.5 year old. He's in a special education preschool now where he will be until he turns 5 and can go to kindergarden, at that point we'll decide (along with the school) whether Jack will be put into a regular classroom or continue in special education. We're incredibly fortunate that our insurance company covers ABA therapy and we receive a tutor for about 2 hours a day after school. He continues to gain ground everyday and I'm so in love with this kid!! I wouldn't change him for the world, although Autism is something he (and us) will struggle with for the rest of his life it's also been an incredible blessing. He's the goofiest, quirkiest kid, but I wouldn't change him for anything!
I first began thinking something wasn't quite right around 6 months of age. I really didn't know, Jack was my first kid so I thought I was just being crazy. He would do this thing where he would ball up his fists and shake his whole body. When I first saw it I was scared he was having seizures. But he wasn't. And the dr. said not to worry about it. As Jack got older he just didn't play with his toys like I thought he was supposed to. Instead he would put everything in perfectly straight lines and just stare at them. He wasn't very interested in toy cars, but when he did play with them he was fixated with their wheels, just watching them spin for long periods of time. He never looked us in the eyes, often just staring off behind us. He would zone out, sometimes staring at the wall, and be completely unaware of anything going on around him. Including us. We knew he could hear us calling him because often times noises would completely freak him out, sometimes noises we could hardly hear. It was entirely confusing. When we left DC my pediatrician kept telling me that they couldn't test for Autism until the age of two (at that point I had begun researching on the internet and was fairly certain that was what we were dealing with). Jack had only a couple words that he would say over and over and over again, didn't call us anything (no mommy or daddy), and spent much of his time alone playing by himself, lining his toys or his favorite, lining up all of his shoes perfectly in order by color.
After we got to Hawaii I was bound and determined to get some answers. After seeing several pediatricians at our clinic on base I was finally able to obtain the referral I needed to see a developmental pediatrician. The most wonderful and scary thing I had ever done. After all, this could mean that this was a reality. It took about a month, and about 4 meetings but we finally got the diagnosis- just as I suspected, Autism. At that point Jack had about 10 words but they weren't used correctly and often were just repeated over and over. He would echo us but very rarely used any sort of spontaneous language. It was hell at that point. At two years old kids absolutely know what they need and want and having no language or ability to convey it resulted in massive tantrums. Sometimes completely out of control. The day that cemented my reality actually came right before our final appointment when we received the diagnosis and we had been in the boys' bedroom and Jack went off. He screamed, hit, kicked, ripped at my clothes and face for close to an hour. I was home by myself so I had to put Liam in his crib (screaming because he was totally freaked out) and bear hug Jack so I could try to calm him. Eventually we both collapsed into a heap on the floor, him quietly crying in exhaustion and me crying out of complete defeat and desperation.
Once we got the diagnosis things took awhile but we hooked up with Early Intervention and had all sorts of assessments done. We found out that Jack was about 15 months developmentally (his highest score was 20 months and lowest about 10 months) at 25 months old. We immediately received a 'skills trainer' that came in each day for 2 hours and worked with Jack on everything from beginning to use sign language until he began gaining words to shapes, numbers, identifying objects and so on. We also got physical therapy, occupation therapy, a speech therapist, and a preschool teacher. We had a huge team but we were so lucky to have them because from there we were able to pin point what we needed to do and how to do it.
It was a long road (which we're still very much on- and always will be) and things always get worse before they get better. But today Jack is an incredibly brilliant 3.5 year old. He's in a special education preschool now where he will be until he turns 5 and can go to kindergarden, at that point we'll decide (along with the school) whether Jack will be put into a regular classroom or continue in special education. We're incredibly fortunate that our insurance company covers ABA therapy and we receive a tutor for about 2 hours a day after school. He continues to gain ground everyday and I'm so in love with this kid!! I wouldn't change him for the world, although Autism is something he (and us) will struggle with for the rest of his life it's also been an incredible blessing. He's the goofiest, quirkiest kid, but I wouldn't change him for anything!
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