Thursday, June 24, 2010

Autism Speaks.

Baby Boy’s recent hospitalization had given me a break from worrying about our impending visit with the developmental pediatrician. But my days of blessed denial that things were just not right were short lived – though I have felt really at peace in the last two days about the possible diagnosis. I had refused to do any research on autism, choosing not to worry over things I could not change. About an hour and a half into the doctor's appointment, I had to remove my head from the sand – nothing like getting a Modified Checklist for Autism in Toddlers to force you to face reality! Baby Boy has regressed in some areas since our last testing in December, but he shows slight improvement in others. We now have a provisional diagnosis of autism and the doctor will also be doing some testing to rule out some genetic disorders. I had not let my mind go to what this might mean, but I finally broke down at the doctor’s office. The kind of doctor she is did not help my resolve to be strong -she is the most amazing doctor I have ever met – she is so caring, compassionate, kind and the best advocate any child could ever ask for. She even apologized because she was fifteen minutes late – which was not a big deal since we were seeing the nurse during the wait. She showed real empathy for what this means, and she was really struggling and hoping that the tests she was doing as well as the questionnaire were not pointing at what she was suspecting. This is the greatest practice I have ever seen, she was not fazed even one bit when she walked in and two tired and wired toddlers had gone to town with all the toys in her office, her nurse also kept Baby Girl company for two hours, playing with her and taking her for a walk and they both offered to help me get the kids to the car. The doctor also gave me her cell phone number to call with any questions, concerns or for help to get my son additional services. She did not try to paint an unreasonably rosy picture – she assured me it could be a very tough road (the spectrum is so wide and we don't know where Baby Boy falls) and doctors are still a very long way from understanding autism, let alone getting a cure.

Everything now makes sense – Baby Boy’s speech therapist, early intervention specialist, case manager as well as occupational therapist had all been asking if I had considered center-based care so that Baby Boy’s needs could be provided under one roof. I was a bit confused since he is getting all his services under one roof – the therapists do weekly home visits – but I think they all suspected autism, but no-one wanted to say the word! This is the new territory we will be exploring – the developmental pediatrician also made recommendations for some centers and advised that he needs daily one-on-one intensive therapies. I am heart-broken. This means separating the twins and for 20-25 hours a week, removing him from the one secure place he has known. I am also terrified that I will mess this mommy thing – my formerly very cuddly and compliant son is now really testing the boundaries, becoming extremely independent and more frustrated at our inability to understand him. I grew up in a family where children’s obedience was expected and nothing raises my blood pressure more than seeing disobedient and disrespectful children. I have been working hard to establish this same expectation for my kids. How do I strike the balance between not letting my great empathy for my son make me swing to the other extreme and become too permissive with him (and possibly turn him into a little monster) or have unreasonable expectations that he cannot meet because of what is going on neurologically? Today, I am broken and I will let my heart grieve. Tomorrow, I will raise my chin, put on my big girl pants and continue advocating for baby boy. Dear, darling boy, you have been dealt a lot, but mommy and daddy will go to the ends of the earth to try and help you overcome your obstacles. And even more importantly, your Heavenly Father can take the ashes of what seems to be a bleak picture and bring Glory to Himself. I cannot wait to see how He will use you. I love you so much Baby Boy, my heart could explode.

1 comment:

Susie said...

obviously, I have no advice or helpful words - just a virtual hug from bloggy-land.... It sounds like you have a great support system around you, and you've had a supernatural peace throughout. Thankful that God gave this sweet baby a mommy!