February 26, 2010

ER visit not more than 30 min wait - Floating Boston

Floating Children's in Boston quotes this on their website as well as advertising on the radio.

"We understand the special emotional and physical needs of children. In addition, we believe children shouldn't wait endless hours to see a physician, so most children coming here wait not more than 30 minutes to receive care."

830 Washington Street, Boston
617-636-5566

Link below under Websites/Resources
http://www.floatinghospital.org/ourservices/emergencyservices/default

February 24, 2010

Whatever makes his day easier

Whatever makes his day easier is a concept I struggle with every day. How much is too much, when is it spoiling and when is it comforting? How much of my day am I therapist and how much am I parent? For me it comes down to being Co-regulator for my son. Every person is born with a part of their brain (the frontal lobe) which is responsible for the regulation of emotions, behaviors, reactions etc. In Zachary's case, there is a breakdown here. As his mother, I have to act as his frontal lobe and am then considered his "Coregulator". Managing a special child can cause you to lose your own frontal lobe ability (lol) so this can be a difficult task!

I actually read this on the Autism Support Network's website, as a blog from a mother. I thought since I use this statement all the time, I'd snag it. I identify with so much of what the mother was saying, I could almost copy her story here.

My inner dialogue goes something like this: "Oh God, not again. It's been 10 minutes since the last meltdown and we are at the birthday pool party! What could possibly be the problem now?" He has become loud, obnoxious, aggressive and/or dropping to the floor and crying. Keep in mind this is a small sampling of reactions. Rewards and punishments do not work with these children because the brain function associated with Cognitive Functioning (correct response and understanding) is faulty, so typical responses to behavior here do not work and in fact backfire most of the time.

Unfortunately there are triggers which can pop up anywhere, anytime and they are--NOT like what the books and doctors state, but they are unpredictable. The water is too cold, it's too warm, water splashed on his face. Or it could be spacial: a child he doesn't know is too close. The background noise could be filtering improperly on this day and because of his Sensory Integration issues (yes a whole other issue which deals with our nervous system's ability to process incoming stimuli) and this could be the cause of the meltdown. I took the wrong towel, even though it's the one he picked!

So what as a mom do I do? Get frustrated that yet once again he is unable to have a good time and is aggressive and rigid? Or do I become embarrassed by my son's out of control behaviors? Do I feel sad that once again my son is struggling or wisk him away for a quick chat that we will leave if he doesn't stop reacting poorly? Usually all of those things flood forward and many more at the same time and one route needs to be chosen immediately. Society afterall looks at us as if he is behaviorally challenged and it is my bad parenting that causes it.

Although we are all guilty of first reactions, with allot of practice, I am much more aware of my own mood/arousal levels and how I respond to him. So I stand my ground, do not make eye contact with anyone and address my child with the The Nurtured Heart Approach. I guess I would explain it as a life coach which a therapeutic heart for the struggling child. You have to submerge yourself in his world and understand how he interprets it, which is quite different than the average person.

Like that other mom's blog.. most of the time I don't know what to expect, what I am doing or how to react but I do know I love my son and he needs more of me than I sometimes have to give. It's a struggle to dig down deep for more when you're empty and exhausted. But I never stop reading, posting, researching, going to seminars and reaching out to others with similar circumstances because knowledge is power. And when you have a special child like Zachary you need a whole plethora of tricks.

These children are gifts no matter how "fancy" they are. I was chosen to be Zachary's mother and can not let him down. I will never stop looking for better ways to make his day easier....

a cheer for suport groups

I have joined some nice support groups through FaceBook.. Parents of: Aspergers, Bipolar, PDD, and Sensory Integration. I also joined The Autism Support Network which has a chat site for Parent's of Aspergers. It's amazing what support from other parents brings to your life. We need to be refilled as our children drain us each day. Find your niche of support.