Tuesday, December 21, 2010

Don't Say You're Sorry

It is with a heavy heart and a conflicted mind that I am writing this current blog post. We took Max to have an evaluation with a Developmental Pediatrician today. This is the same appointment that I've been putting off or telling Allen to schedule. (knowing darn well that he'll never schedule it) I felt that the Pediatrician wouldn't be able to give us any kind of a diagnosis. I figured, we'd leave the office just as confused as when we'd walked in. I thought the doctor would tell us that Max has a speech delay, but that he wasn't really sure what all was going on. Honestly.....that is what I completely expected him to say.

Instead, after and hour and a half of talking with us and playing and doing some testing with Max, this is what he said. Max functions speech-wise at the level of a 14 month old. His imitative/play/social skills are a the level of a 21 month old child. Max's real age is 31 months. The doctor told us that Max is absolutely on the Autism spectrum and gave him such diagnosis. I felt like someone had punched me in the gut....really?? Max?? He is "certainly on the spectrum?" My social, loveable, cuddable, eye contact making little guy? As we all know though....there is a spectrum....a broad range of severity where people can be diagnosed. Admittedly, the doctor said that Max is on the mild end of the spectrum. He is considered more mild than Nick was because Nick had temper tantrums and lots of trouble transitioning. So....although he is a tad less severe than Nick, basically, they are pretty close to each other as far as where they fall on the spectrum.

The doctor suggested that we get Max into some daycare for a day or two a week and hire a Speech Therapist to come work with Max at home. I have no idea where we will find this and how in the world we will afford it? I just have to say that Max is actually receiving services from Infant and Toddler Services, but they SUCK!! They are not doing therapy with Max at all....instead they come and talk to the parents about strategies to use at home. Well, this isn't our first rodeo and that is NOT what we need......we need someone to do actual therapy....sigh.

I have spent the entire day on the verge of crying. Is this somehow my fault? Did I do something wrong? Is it genetic? I feel overwhelmed......my husband started to cry in the car on the way home from Max's appointment. I found myself being the strong one. I told him that Autism is just a word.....just a diagnosis......it doesn't change anything. We have been dealing with two children with Autism for 2 1/2 years now....and just because someone finally labeled our kid, that doesn't mean that anything is going to change or get harder. I told him that God must know that we can handle these two beautiful little boys. I told him that things happen for a reason. But really, I am wondering if we will ever catch a break? Will it ever get easier? Is there a God? If so, what is his reasoning....how far are we to be tested? Can I really handle two special needs children???

I'm trying to be positive....really, I am. I am so grateful that they are not so severe that they will never speak or potty train or tell jokes. I KNOW that it could be so much worse. I could have a child who is fighting for their life and batting cancer or some other disease. There are so much more worse things than Autism....even two kids with Autism. But dammit....why did it have to happen to us?? I'm scared....what if my marriage doesn't survive this? What if I can't do this? But...I know I will survive this....because I always do. And I know that I can do it.....because I was raised to know that I can do anything! I could never, never give up on my boys. Nick speaks in sentences now.....and hopefully I can see Max's future in the things Nick can accomplish. So....please don't tell me you're sorry to hear this news. Give me a hug and let me be just a little sad....but know that I wouldn't change my life for anything and that I love my boys just the way they are. I'm not sorry....I'm sad, scared, grateful, nervous, worried, relieved.....but I will never be sorry.

3 comments:

  1. When my son was first diagnosed, I thought to myself, "Of all the diseases he could have, I would have chosen this one." That was reinforced when my five month old niece was diagnosed with cancer. She's in remission now and was officially pronounced cancer free after eight months of treatment.

    Have you checked for resources through your school district? That's who did my son's therapy, the Area Educational Agency affiliated with the school district. They came out to the house once a week and did really good things with him. Floor play and all.

    I'm not sorry either. My son is who he is, and like it or not, the autism is part of him. In the end I think it may have made me a better parent, and although I have to take everything day by day I know that we're on the right road for him.

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  2. Really dig around to find local resources. I hate to hear that the people who worked with Nick did not do their job. In PA we have Early Intervention and it is all covered by the state.
    I teach children with Autism and they are some of the most amazing students I have ever met.
    It sounds to me that you are having all the "right" emotions right now. I will be thinking of you and your boys.

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  3. Oh my goodness. This is my first visit to your blog. I love your brutal honesty! I have a 29 year old son with multiple disabilities, including autism. All I can say is... one day at a time, my dear. This is why I love blogging. Bonding through other moms (and dads) on the internet makes me feel less alone. I am going to be your newest follower :)

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