Wednesday, April 23, 2008

Sorry folks no smile, I was lucky to even get the picture!

A new day can often bring with it some clarity of sorts. Today is such a day. After my marathon post yesterday I will try to be more concise so those of you that are so kind to check in on us, can get back to your lives. Today is a better day for Joe. Which makes for a better day for all of us. It is amazing how one 4 year old can be so all effecting to an entire household. I had a brain storming session with his pediatrician via the phone yesterday and we have decided that the medications we have tried, all stimulants, are not for Joe. Stimulants for you and I, would see us bouncing off the walls. For kids with different Attention Deficit Disorders they work in the opposite way. For Joe they bring out too much of his obsessive compulsiveness thus making for a very stressed out Joe. What he needs is a mood stabilizer such as Strattera but it is not approved for children under 6. Our Ped. has a large percent of his practice devoted to Special Needs children and when he says he's not comfortable placing Joe on it, then I take that as gospel. So this morning with the minimal of clarity I am working with I have begun to delve into other options. First, another O.T. / behavior evaluation and thanks to our fantastic O.T. that we have for Zoey , she is setting us in the right direction. We are blessed beyond words to be surrounded by the clinicians that care for and love our children. So, it's not much but it's a start. The beginning of a game plan and game plans do wonders for that feeling of just being stuck in that spinning your wheels mode. As for the Princess..... last night marked the worst nights sleep to date. Finally at 4am I had to bring Mark into the mix of things. I usually manage myself. I always have with all the kids. I have felt that he has had to get up and function at work and at least I have been able to be at home. Yes ,needing to be functional but not in the same manner. I operate better sleep deprived then him also. But last night was different. My body just cannot keep up with her milk demands and when I am with her that's all she associates me with. So today I think after I nurse her I am going to supplement her with a couple ounces through her g-tube. We have only used it for meds. for months  so it feels a little like a back slide but maybe if her tummy remains full it will help with her crankiness. Who knows, just a thought. Nothing earth shattering I know but today I feel a little less apt to completely go over that edge rather I am still precariously teetering. Which way I go is anyone's guess.


Reagan Leigh said...

I haven't heard from you, it sounds as if you've had a rough few days though, so don't worry about it! It's so tough that our kids basically have to be guinea pigs with these medications. Hang in there!

sara said...

Hi Heather,
I feel your pain with your son. I have a son who is 2 and is suspected to be on the autism spectrum. We have been working with him since he was 6 weeks old. I also have a daughter who I thought just had defiance and adhd. Since studying autism, relationship, and child development I have realized she has similiar difficulties as my son but to a much smaller degree. She is a fantastic kid as you describe your son, very engaging and sweet but unfortunately her little brain does not function for her in a typical manner. The therapy RDI that I use for my son has done wonders for him and I am beginning to use some of those concepts for my daughter to help remediate some of her issues and help her brain to function better. RDI (Relationship Development Intervention) is absolutely a wonderful brilliant remediation program for children that was designed by a psychologist, Dr. Gustein. It is time consuming and somewhat expensive but it sure beats behavioral strategies. It does take time too and I know you are overwhelmed but I wanted to mention it because I believe so strongly in it. I read your blog daily and you give me so much inspiration from the strength you relay through your posts. I feel like you many days, just hanging on the edge, but hang in there, you have a beautiful family and seem like a WONDERFUL mother!
(sorry this got so long)

rae said...

Heather... I just wanted to let you know that I gave you and award! Your words touch so deeply... you have a gift. So in your spare time (ha ha I know, I know) pop over to my other blog
and pick it up. Hang in there... sending lots of thoughts and prayers your way.