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October 15, 2002
Let me just start by saying Hello! and welcome to all the new diary writers!! How busy this place is getting to be. I'm thrilled to be included in such a unique, special group of women!
Let's see, where did I leave off last time? Oh yes, my mil taking Aiken to the dr. To understand the significance of this event, you have to understand my relationship to her and the rest of my husband's family. Remember I said we considered adoption and they didn't take it so well? Well, to mince words (and time) it evolved into a nagging, pleading, desperate call from my mil and her own mother at least once a day the longer my pregnancy grew. Please understand I'm not opening this up for debate, right or wrong, but want everyone to see where I am coming from. After Aiken was born, I spent the next 4 days at my mother's house, and invited my mil to try and mend things and let her visit with Aiken, as she lives over 500 miles away. Well that is where the trouble began. She has had it in her mind that I don't care/know what I'm doing, etc in regards to her grandson. Please understand she is a very loving person, and this is out of concern for the family....she's just very opinionated sometimes. (obsessive is another good word)
So for her to take him to the dr was initially something that made me irate, but it really ended up being a blessing in disguise. I then took him to our pediatrician and demanded that she give us a referral to an early childhood program to have him evaluated. My frame of mind at the time was to prove my mil wrong. It set in motion some things that helped me see that Aiken was very seriously delayed in some areas, but also that there wasn't a desperate health crisis on our hands.
He was evaluated by the ECI people, and our initial diagnosis was hypermobility, and a delay in all gross/fine motor skills of 9-12 months. (Speech for their purposes is a gross motor skill.) Hypermobility is a condition, affecting possibly all joints but usually just major ones like the ankles or wrists, where the muscles and tendons are too loose, with enough low tone that they cannot function within normal range of motions. This meant my son could not bear weight on his legs, and to the extent it mattered, could not necessarily even move his hips in the proper way to crawl. He developed this adorable (yes I'm biased! :) ) crab-walking kind of scooch to get around. He would sit on his behind, spread his legs out like you do to roll the ball, and plant his left hand in the center of his legs to pull himself forward. It was so cute!! and pretty clever, as he got really fast there towards the end of it, and could still carry something in his left hand. Turns out though, it wasn't his idea for the carrying arm: his right side has always been his weakest side. He will end up being left-handed, leaving me always to wonder if it's due to the weakness or to the fact that my aunt and Adam's dad are left-handed.
Side note on me: I started back to school (college) when Aiken was three months old. I am finally going to graduate in December!!!! (With my undergrad) I am so excited!!! (especially after it will be 5.5 yrs total in school...ugh!) But it brings up a couple of questions for you all to answer on my TTM board (yes I'm copying Kim's idea: thanks!)
1. Do you ever look back and wonder if you could have done something differently to prevent/lessen your child's disability or condition?
**I know for some of you this answer is automatically no, as your child's condition is inherited, or medical science doesn't know the reason, etc. I ask this from my own perspective, as Aiken's condition can be grown out of...if I hadn't been so busy in school, would I have noticed earlier how delayed he was? insisted earlier on a referral? etc...
2. What have you had to sacrifice both professionally and personally for your child and their needs?
**Not that any sacrifice is less than the other, just an honest inquiry. For example, to continue to get Aiken to his therapy, I have recently turned down a Senior Staff position here at the library. Adam and I have decided that with his current salary, as nice as it would have been to have such a great (and it would have been great!) combined income, Aiken had to absolutely have first priority. Like I said, not that anyone's is less or more worthy than the other, just wondering who else has experienced this.
I'll get into the beginning of therapy (what a trip!) next time, as it's gotten long again already. Thanks for reading so far. I'm really trying to keep these entries organized, letting you know where we've come from, to appreciating where we are now, and what we are doing. Like I said in my intro, I can ramble all over Texas if I'm not careful!
Have a great Tuesday!!
"Talk" to you all later!
Amanda Z :p
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