Struggling With Decision

shutterbunny

New Member
Miche,

you have received A LOT of great advice and support in this thread. I found this thread via a google search about abilify, and your post prompted me to join the forum. It seems to be a magnificent place of support and knowledge, and I wish I'd found it before yesterday!

I just wanted to share a little with you about my difficult child. While I'm guessing that all of the kids here have parents who give them unconditional love, I can say with honest conviction that no child is more loved than my difficult child. (again, I'm sure we're tied with all of the families here on this front)

I also want to say that I've NEVER been accused of having tact or being subtle, so if anything I say comes off as offensive, please know that it isn't intended that way. I'm just very passionate about my son as well as any kid in a situation that is more difficult that the standard "terrible two's" and what-not, and I tend to speak/write exactly what comes to mind while lacking a "filter" that makes it come out in a more subtle, tactful manner. (and I tend to be long-winded, sorry!)

My son was a handfull even as an infant. He was also precocious; using three words appropriately by the age of 5 months of age (adjusted for his preemie status, 3.5 months) Thank goodness we had a pediatrician who didn't brush me off as an overly concerned first-time mom...and believe me, all of my friends and my family did! I really could post forever about my son, but I'll spare you all from the long-winded story as all of you have been in our shoes somewhere and some time.

The long and the short of my story is this...I knew at a very, very early age that my kid was exhibiting atypical behavior...my friends tried to tell me I was overly worried, they also tried to tell me that maybe I spoiled him, they told me it was colic, they told me it was just a volatile personality and some kids were like that...in short, no one would believe me that it was NOT anything "run of the mill" except our pediatrician. I talked to him rationally and firmly and he listened and he asked us to see a neurologist.

We have been on a journey ever since the age of 5 months to find a reason or explanation for his behavior. I've had the meetings with daycare providers, I've gotten the dreaded calls from daycare and preschool. I've cried myself to sleep and all the way to work more often than I care to believe because I had no answers and desperately wanted them while being terrified of what the right answer might be. I lobbied at the age of 1 year to have my son put in the Early Intervention program and won approval on his behavior alone, at the age of three we lobbied for CPSE and got it.

We have really walked on eggshells with my son for so long that the idea of not being on guard 24 hours a day is slipping from our minds. Finally, after so much trying, we found a neuropsychologist...this is recent, as in 2 weeks ago...and while he's not willing to put a positive diagnosis on my son without spending more time with us and hearing from our pediatrician, neurologist, school and daycare, he did say that he's convinced my son's outbursts have a neurological component and gave him the "insurance diagnosis code" of unspecified mood disorder. Miche, my son was doing the very things you describe of your lovely little girl. I'm so often reminded of a nursery rhyme my mother used to recite to me when speaking of my son...when he's good he's VERY good and when he's bad...(I hate the end of that nursery rhyme!). But it's so true. When my son is having "a good day" he is the MOST compassionaate, empathetic, loving, sweet, funny, smart young man you could possibly imagine. When he's having a "bad day" he's become almost unreachable. I can also tell you with pure conviction that these things get worse, not better if left untreated. Don't mistake an outburst of rage or anger or sadness as a temper tantrum...that's not fair to your child. Also understand that getting a diagnosis EARLY is saving your child, not dooming her or your family to something worse than if you didn't know. In reality, not getting a good, firm, correct diagnosis is dooming her to years of unhappiness which will only compound whatever problems she is dealing with and make them worse and more dangerous.

Make no mistake, at a very young age (younger than 3) children start to realize when they are "different" or "out of control." Their peers also know when they're "different" or might spin out of control. They realize this and they want it not to happen, and this is a building block for anxiety and low self esteem. They don't know why and they won't communicate this to you because they know nothing else, they don't know how to voice their fears, and they are worried that maybe mommy and daddy won't understand and view them as different. At a very young age, this seed of self doubt can be planted and like a weed it grows with-o regard to a loving environment, and like a weed, it can take over. The world can be cruel even at such a young age, getting a proper diagnosis and treatment (which may or may not mean medications) is the BEST thing you can do for your daughter and for you...yes, it's scary to put yourself in a position to hear your child may have something wrong, but don't let old-world thinking stop you from finding out. If you child had the flu or broke a bone or had some disease, you'd find the medicine, therapy, advice you needed to make her better. Ignoring a medical problem won't make it go away...this is very much the same thing. The only guarantee is that the longer you wait the harder it will be to gain control and the harder it will be for your daughter to be truly happy and relaxed which I can tell from your posts is something that you want for her.

I wish you all of the luck in the world with your journey. My son is on depakote and has just started abilify (too early to know if it is helping and if the dose is correct). We, as his parents, finally feel we are on a path to letting our son shine in the world as the beautiful child he is. We feel that we are giving him the opportunity to be seen for everything that is wonderful, unique and positive about him vs. the kid who has explosive issues. Upon hearing "mood disorder" my heart did sink even though I suspected it...but now, so quickly since that second, I feel for the first time that my son has a chance at a wonderful and successful life. A diagnosis is not a curse, it is a key to freedom for your daughter and her happiness...in the end that's what we as parents derive our happiness from, as well.

Again, I praise you for seeking out this group and loving your daughter so much. That love and concern you are showing is what will pull you through.
 

PJD123

New Member
Miche, i Haven't been on here in awhile, but I just scanned through your posts in this post and let me tell you, I could've written the same thing about my 4 y/o DS.

Shortly after his 3rd birthday, Difficult Child teacher told me he wasn't participating in circle time, he was getting more timeouts, etc. Then he switched classes last June, to be with the other kids his age. Things got worse, he was really defiant, would run circles when things didn't go his way, started running for the doors.

We went to a child psychologist in August and ended up with an ODD diagnosis. After reading up on it, I realized he fit the description to a tee. husband & I learned how to deal with him and it helped a bit, but not enough.

We switched daycares in September to a place that had lower ratios and better layout. They promised they'd follow our doctors. advice. They didn't. Got a new director a month after we started. He was doing much better, really bonded with the guy teacher's asst. in the class, but was still getting out of control. I had SPAN (Statewide Parents Advocacy Network) come evaluate him in November. When I sat with the director to review the evaluation, she instead told me that they couldn't handle him and wanted him out...that day! What a disappointment.

He was doing the kicking, hitting, punching, supposedly spitting when they tried to control him. He would scream and call them names. I was a "bad, bad mommy!" :frown:

Thankfully I was out of work at the time, so I stayed home with him and easy child. I realized that he seemed pretty hyper, so in February I took him to a Neurologist after the pediatrician. suggested it at his 4 yr. appointment.

The Neurologist had us do bloodwork first to rule out high lead/low iron, thyroid, etc. All came back fine and the dr. put him on Metholyne 2.5 mg. chewable 1x a day in the AM. I don't know if there's much of a differnce, because I'm working again and he's back in daycare. We go back to the Neurologist tonight to follow up and see if he needs to go to twice a day, or higher dose.

By the way, he is now attending the ARC (Assoc. of Retarded Citizens) daycare, which has been wonderful for him. It's mostly for Autistic kids, but can be mainstream too. Most of the kids have mild problems and it's a small set up, they treat it family style, since they're all different ages and it's a small group. The ratio is 1:3, and he gets practically one on one attention, which has been awesome for him. The teachers have experience with special needs kids and know exactly how to handle him. They never say "no", or "don't do that". It's always positive or neutral reinforcement. I am amazed when I hear them deal with the kids.

Don't be afraid to go get difficult child evaluated by a Neurologist and get a diagnosis. It will relieve soo much of your stress...it's like a huge burden off your shoulders. (((HUGS)))
 
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