Friday, February 26, 2010

And Breathe...

Can I just start by saying, "UGH!!!"?

The thing about knowing that you're going to be a parent of a child with special needs, is that you start worrying EVEN MORE than normal that somehow you're not up for the job, or that you'll mess them up really badly, or that "Why, if God knows exactly what he's doing, would he choose US...completely flawed, often self centered and occasionally emotionally unstable people, as parents??" All of this thinking comes along with the daily struggle of trying to raise and discipline a very independent toddler who is testing and challenging me on a minute by minute basis. And reflecting me...which is scary. I am at a loss, and being hormonal and pregnant does not help my situation. To be specific, I don't know what to do about Christian's cursing. I tried completely ignoring it in the beginning, but it seemed to escalate. Now, he's trying out his favorite phrase in public, at the mall, and over at friends' houses, and each time he uses it somewhere new, I find myself shocked and unable to completely restrain some sort of facial reaction. I've tried saying that these are not nice words and I don't like them. He actually seems to respond okay to this and it seems to stop it temporarily, but I don't know if this is the right thing to say and do. Then, I wonder if I'm jumping from tactic to tactic too quickly and not giving one method a solid chance to work. UGH...I'm getting a headache just thinking about it. Then, there is the typical behavior stuff: not listening, testing me to see if I'll follow through, getting into anything and everything, tantrums, etc. Charles said tonight, "I feel like the world's worst Father." I replied, "And I feel like the world's worst Mother." There is a small amount of comfort in the fact that I guess we can't REALLY be the "World's Worst Parents" if we're making statements like these. In my mind, the actual "Worst Parents" probably wouldn't even stop to think if they were good or bad at parenting.

I got to meet up with Tracy, the woman I met online on the DS network. Her little baby, William, is 16 weeks old and has DS. It was both encouraging and sobering. The conversation with Tracy was great, because I got to ask her all about her experience when William was born, and what the first 16 weeks have been like. She also has older children, but they are much older than Christian. There was one thing that was...interesting...and I'm not sure if I'm reading into something that's not there. The waitresses, who were all over Christian and how "cute" he is, were pretty quiet when it came to baby William. They looked at him curiously and one asked, "How old is he?" Tracy replied that he's 16 weeks, but that he's a little guy. I guess I just expected more fuss over a baby, but maybe a precocious 2 and a half year old was just stealing the show. There just seemed to be a strange curiosity present, and I'm not sure if it was real or imagined. I wonder if Tracy felt it too... I guess I may have my share of these real or imagined moments when Peanut comes along, because he will be a little different than most babies. I don't know HOW specifically yet, but he will be. ...Maybe he won't curse. That would be different, but nice. Maybe he'll listen to me, maybe he won't "test" me and throw daily tantrums...that would also be nice. Although, just like Christian, I'll love him anyway, no matter what.


P said...

I had to explain as best as I could yesterday that a "degree" of DS is extremely rare (mosaic) and that 95% (or was it 97%) of the DS population has an extra chromosome in every cell despite how much we might think they fit societies preconceived notion of what a person with DS "looks" like.

Looks are not connected to prognosis or expected cognitive abilities or contribution to love and change mindsets!

P said...

And sadly enough within the past five years, a mom was told that only mosiac children with DS would survive or live any type of life.

I (now) use Jennifer Graf Groneberg's Roadmap to holland approach, I mention DS when I feel like it. Lately that has been where is mattered so less often but I would in a setting where someone is likely to know soon enough from me or general coffee talk like a preschool for a sibling.

I do tend to mention the slower growth and separate growth charts for infants and always add, "Who knew?".

I used to mention the expected average height difference or smaller stature but that I add depending on the reaction to the first part or instinct of whether the technical detail seems like something the other person might find interesting. Usually people are processing and digesting the infant growth.

P said...

The first time I tried to not explain the reason for the size, was if course to the mom of a just turned two yrs old premature infant! But people without kids or only grown kids don't necessarily know babies expected sizes as wellas we might expect.

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