"Early Intervention is Best!"....So They Say..

Two weeks ago, I had a horrible head cold, the worst I have ever had.  I had an ear infection, pink eye and a painful sore throat and felt like a bobble-headed zombie.  Failing to realize the severity of my symptoms, I drove myself to work and endured the concerns and somewhat antagonistic ("why is she at work if she is sick?") glares of my coworkers and decided to get myself to the ER after 4 hours of being on the floor.  Ten days of amoxicillin and 7 days of oxyfloxacin eye drops have done wonders for me, although I still have a nagging cough.  I have not taken antibiotics in over 15 years nor have I gotten this sick for the same amount of time. I have always tried to give my body a fighting chance and have taken natural remedies like manuka honey. I think I just willed myself to be healthy and took good care of myself with plenty of rest, good nutrition, supplementation and a positive outlook on life.   This time, I knew that that was not going to be enough to get me back to health or at least, not fast enough as needed to be in commission as a mom for Lucas. Being sick has also made me painfully realize my own limitations as a parent of a special needs child and I have had to accept the fact that I am not superwoman, especially when physically weak and sick.  Not being able to do the usual things for his care, being in pain and feeling fatigue made me even  more depressed and sad. It also brought me to the sorrowful realization of my own mortality and a deeper concern for Lucas' care in the future.

What broke the lucky track record of health?  As much as I hate to say it, I think it has much to do with stress and not taking care of myself as before due to the growing care demands needed by Lucas.  It's really not his fault but my own lack of discipline in managing my needs along with his.  Recently, I have had to really come to a decision about whether to proceed with the in-home therapies (ABA) he receives and it have caused immense stress that has led me to, on some days, forget to eat or sleep enough and stay in a funk all day.  We have continued ABA for over two years and it is hard on me as well as on Lucas as I, as a parent, also need to be trained in the method.  I am not satisfied with the outcome we have thus far obtained for the amount of time, effort and stress we have invested in it; let alone my growing dislike and distrust for the supervisor (see previous blogs).  Lucas still shows no form of communication, PECS has not really helped in any aspect of daily life and he still is unable to feed himself with utensils or drink from a cup without assistance.  These issues are innate problems in neural circuitry and until his brain develops to a certain cognitive level, no amount of ABA is ever going to make life easier or better for him.  This is the conclusion I have drawn and I don't care how many experts hail the "early intervention is best" mantra, it just isn't right for Lucas, yet.  I have had this gut instinct from the beginning but have pushed it aside thinking the experts know best.  Now, I find that some experts like Dr. Connie Kasari of UCLA also feel some subpopulations of autists such as Dup15q may not quite benefit with early intervention. I kick myself now for not listening to my instinct.

It's been two weeks since we stopped ABA and it has been so liberating.  Lucas seems more content and peaceful.  Perhaps, in the near future we will resume the sessions, this time with a new supervisor.  Maybe that will make all the difference.

Having a child with special needs (actually having a child period) makes watching the sickness of the world so much harder to accept than before I became a parent.  Sickness such as random violence, war crimes, domestic violence, child porn, ecologic pollution from greed, cruelty to animals, children or anyone weak and disenfranchised; man-made famines.... For each of these events, I see my son's face and it makes me sad, angry, worried and afraid.

On a brighter note, God continues to show mercy on humankind and sends beautiful souls into the world to change it for the better.  Here is a story of one such great soul who incarnates into the world in the weakest state to touch and change the hearts of so many.  I am humbled and inspired by souls like Margarite (and Lucas).  Click for Margarite's story.


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It is finally raining in SoCal and Lucas gets to wear his rain gear!