An internet mom-friend posted these words yesterday: "It's with a heavy heart that we write to you now. It's been a few weeks since * was evaluated at *** on 4/22. On 5/1/08, we received the blow to our lives that we were dreading. Our sweet *son* has been diagnosed Autistic. It's been the most horrific time of our lives ... we are grief stricken and feel sick with sadness."
Her email went on to say in more detail what she and her husband were dealing with but I must admit her email hit a nerve for me. I don't know why but I don't remember feeling like this exactly. We had spent about 6 months wandering around what seemed like this dark cave, groping for the walls, for anything to hold on to and claim. So when James finally got diagnosed I felt a sense of relief. "Finally, a direction to move in for recovery." I mean if you go to the hospital because one day you can see and the next you can't, there is a sense of relief when they finally tell you that it is Diagnosis X because now they can start treating you in an aggressive fashion if need be.
So I read her email slowly and prayerfully hoping to come up with words to encourage and give hope. I wanted to share them here not because I think that I am an awesome person or anything like that, but because I feel like these words are the Truth and we can all use to be encouraged by them everyday: "Hi. I just got a chance to read your email. I should tell you upfront that I am sometimes jokingly called Pollyanna because I always look for the silver lining. That being said, I wanted to respond in a loving and Christ-like manner so here goes: Our son James was also Dx'd with ASD at the age of 27 months. At about 19 months he had a major regression: complete loss of language, head banging, spinning, meltdowns... We had him evaluated by Early Intervention and while we were waiting for 'stuff' to get done I did some research of my own and realized that what we were probably looking at was ASD. I have to say that for me hearing his Dr give the official Dx was a weight lifted not a burden to bear. We had been living for 8 months in a sea of chaos and uncertainty and it was a relief to be able to point to something and say 'that's it!' Once we finally got the Dx I knew what path to finally take. I didn't have to guess which path we needed to walk I could confidently say this is what we are doing. Having said all that I want to encourage you... First, we are ALL made in the image and likeness of God. I have started reading a great book called Same Lake, Different Boat. The author (can't remember her name) is a Christian with a son with Downs Syndrome. Her basic thesis is that we need to change our view to be that "We are all normal people living in an abnormal world." If we believe that we are all made in the image of God then none of us are abnormal. It is the fallen world that we live in that is abnormal. Anyway I digress a bit. I want to encourage you to look at *'s diagnosis not as something bad or a burden to bear but look at it this way: * is 'fearfully and wonderfully made.' The dx doesn't define him Christ does. I know that it may be hard to hear but there is a bright side to all of this. Now on to practical, tangible help: After James's dx I went online and looked for advice from folks as to where to start. I read about GFCF and the GF part scared us so we removed dairy from his diet (casein free). We had also started him on some supplements that a friend had recommended when he first regressed. We are now firm believers in the DAN! protocol. It is the idea that you can help (and possibly cure) your ASD child through biomedical intervention. We are still in the early stages of all of it because my husband had a hard time at first believing that it would actually work. But now we have a DAN certified Dr and a DAN nutritionist and we are moving forward. I also wanted to mention one other thing: DIR and ABA don't have to be the exact opposite. And a lot of the "experts" in autism recommend that EVERY child with ASD receive some level of ABA everyday. Most of us hear ABA and we think of discreet trials. I am pretty sure that this is not going to be what * needs. And if this school really is that good they will adjust the goals and objectives to specifically meet HIS needs. We also thought that ABA was not going to be right for James but then a friend who is a behaviorist and works with ASD kids explained ABA to me more in depth and I realized that ABA could actually make a huge difference for him. (We have been predominantly DIR also since 22 months.) I wish that I lived close enough that I could come and fellowship with you and your family and possibly bring some hope in to this dark time. If I can be of any help please let me know and I would be happy to spend time with you on the phone walking through whatever you are doing. I don't know if you are a reader but if you are looking for something light and encouraging may I recommend Louder Than Words by Jenny McCarthy. (I will warn that she uses some foul language.) She takes you on her journey though what looked like hell to a point where her son is almost recovered. I laughed, I cried and I was motivated to do something that would help my son rather than wonder why he wasn't getting better. And again if I can be of ANY help please don't hesitate to ask."
I hope that you all see the joy and hope in adversity and celebrate the God who created us ALL in His image.
No comments:
Post a Comment