Sunday, December 28, 2008

Well, it's not a death sentence.....

That's what I kept telling myself when we got the diagnosis. If you have a child on the spectrum then you know all the emotions, the shock, the denial, the sense that you knew all along that you'd be hearing those words. It wasn't like we were totally unprepared. We'd had an earlier diagnosis of global developmental delay. The developmental pediatrician had even discussed the possibility of an autism spectrum disorder, but had hesitated to label it as such since Becca was improving so much and making progress. I remember anticipating that visit to the doctor. Becca was three years old and had started preschool. It had been a few months since the doctor had seen Becca, and I was just so sure that she would see even more progress and forever put to rest any concerns about the possibility of autism. Instead, I learned just how far behind Becca was in all areas of development, just how "atypical" she was in language and socialization, and how she did indeed meet the criteria for a diagnosis of PDD-NOS. My heart was just sinking as I broke the news to my family. My husband Ron had not been at that visit with the pediatrician, as we had thought it was just going to be a typical well-visit with the pediatrician and I hadn't wanted him to take time off from work. He was less prepared for the diagnosis than I was. I felt like I was dropping a bomb on him. Then I had to tell our son, who was eighteen at the time and going to school out of state. My entire extended family was in Rhode Island at the time. My in-laws lived less than an hour away in Philadelphia, but I have to say I didn't feel we really had any support at that time. To some extent that has changed, but our family is complicated, and this has been a journey for all of us. Some are more on board than others. Some remain totally clueless and are either uninvolved or choose to judge us without any real knowlege of autism and what this means for our family.

It's not a death sentence......

Those are the words I kept saying to myself as I came to grips with the diagnosis, and to others as I broke the news to them. In a way I was trying to tell myself it wasn't so bad, it was "only" PDD-NOS, not full-blown autism, and that she was going to be just fine. I also felt I had to downplay it with my inlaws, who also kept insisting she was going to be just fine. Some even thought the doctor was just plain wrong. At that time, it just wasn't an option to pour out my heart and reveal my fears and feelings of despair.

But there was more to it than that. At that time I didn't have the words to express to anyone, even myself, but I just wasn't going to accept autism. It was not going to define my daughter's life. I was going to get my baby back. I would stop at absolutely nothing. And that is where we are today. Neurodiversity people, be warned! I'm another one of those mothers you just hate. My little girl was NOT meant to have autism. It does NOT define who she is, and it is NOT going to be her life and her future.

It's not about accepting my daughter for who she is. I actually love my daughter for who she is, an adorable, sweet, caring, empathetic little girl. I love her imagination, her creativity, and her sense of humor. Autism is not who she is. Autism is what she has, a medical condition that has brought her incredible physical pain, daily struggles, frustration, and isolation. It has made her the object of disdain and rejection. You neurodiversity people think autism is so wonderful? Glad you're enjoying it. For my daughter, it just plain sucks! Keep your autism if you love it so much, but my daughter would gladly leave hers behind, and she has told me so herself.

Earlier this year we got an "upgrade" in diagnosis. The psychologist who did a neuropsychological evaluation felt that high-functioning autism was a more appropriate diagnosis. I agree with that. But I don't think the earlier diagnosis was incorrect. It was most certainly accurate at the time. Becca has made tremendous progress. We still have a LONG way to go. And by the way, high-functioning autism is no walk in the park. Becca struggles. We struggle. Because she has some language skills and cognitive strengths, much is expected of her. People don't understand her difficulties with comprehension or her inability to always control her behavior. Any autism spectrum disorder is life-changing and significant. But I believe with all my heart that full recovery is very possible. A very well-known and respected behavior therapist recently came to our home to do an FBA. She said when she first spoke with Becca she would have thought Becca had Asperger's Syndrome. But within just a few minutes Becca's language deficits became very apparent. So there is much work to be done. We've made a lot of changes this year. Becca is now educated at home through a cyber charter school. She gets far more services than she did while in public school, and the services are more intense and of better quality. We have changed her diet and are pursuing a different direction through biomedical approaches. I feel more hopeful than ever. I envision Becca someday telling me what it was like back when she "had" autism. I see it happening. Autism is not going to have my little girl forever.


  1. Finally a blogger that is not afraid to say what is really on her mind. I agree with you and feel your frustration. I also love my son for who he has become due to medical professionals and pharm companies greed. In addition we get slapped in the face by insurance companies who refuse to pay for therapies that are considered "alternative," or not proven to work. I can not find one scholarly journal article that has actually researched, studied, or refuted Tomastis, Interactive metronome, or Hippotherapy. There is no justice for our children at the moment. However we need to continue to fight and our stories may encourage other mothers to join the cause and create more awareness.

  2. Hi Kody, thanks for commenting! Oh, I hear you on the insurance! What is the point in having TWO insurance plans if neither one will pay for what our kids really need? And now, I'm running into issues with my health savings account. They want a letter of medical necessity for all the therapies. You know how that goes, the doc writes a great letter, then it gets denied, just like with insurance. Umm, it's MY money I'm putting into that account, isn't it? If we don't use it, we lose it, which means they gain it, but how can we use it if they keep denying our claims?

    ASAPhilly had something about HBOT recently, and our local Dr. Negativity just had to shoot that down, claiming there is no safe established level of oxygen for children. OK, so is there a safe established level of Risperdal? I already know there isn't for my child. Bet he prescribes that stuff all the time. Then somebody else jumps in there warning about the HBOT facilities that only accept cash. We can't afford HBOT right now, but I probably wouldn't think twice at a cash-only policy, because that's no different from all the doctors and therapists who don't accept insurance. There are plenty of them making money off our kids, and I believe Dr. Negativity is one of them.

    Oh well, we can always do what Rhema's family is doing for therapy. Follow the link I have to the left for the "Autism in a Word" blog. ;-)


Before autism