Loving & living with a special needs child

7.8.2000

past experiences with respit care have me a bit paranoid i guess. every time we found someone that we liked and that worked with kristav fairly well, they had moved on in a matter of a few weeks. so when his current respit worker took a vacation last week (there being 5 saturdays in july and us having only 24 hours in a month) i was worried he wouldn't show today. i am pleased to report that he has shown up. :) his only problem is keeping kristav from spinning toys and things, but we ALL have a problem with that. he is establishing a bit of a routine with kristav which is really nice. they go upstairs and clean the room and make the bed (which kristav can do with help, i am proud to report). then spend some time on homework, if he has any. then comes lunch and 4 hours of play time. he's really good about playing with him, taking him outside and dragging him around on a skateboard we have or playing ball or going out back and helping him get wet (it's hot out here), and yet he can be firm wnough to keep kristav out of trouble. amazingly enough we have had respit workers who do not supervise or who do not play (they try to sit him down and read to him) and make no effort to make him stop the spinning. sadly most of them have been women, which i do not understand. and men respit care workers are not that common. we've been lucky to have tom.

"Family Opportunity Act-S. 2274



If you live in the Washington, D.C. area and are able, please attend the
Hearing on 12 July. Bring your children, neighbors and friends. Let's pack the
room and send a collective message to Congress: Parents and Families NEED
this legislation that will help families of children with disabilities and special
health care needs access needed Medicaid services. Parents and Families
WANT this legislation to free them from the bondage of poverty and inability
to move forward with their lives. "----The Friday Fax

posted by domynoe on 4:21:04 AM | note me

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why is it, on the one night i REALLY want to go to bed early, he's awake? i don't go to sleep until i am sure he is...and he's wide awake. sigh

posted by domynoe on 4:15:27 AM | note me

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7.5.2000

i am amazed. despite spending most the day with dad (who is very lenient and doesn't help keep the routine and rules with kristav), and going to grandma's for ice cream, and firecrackers being set off on our street til 11:30 pm or later, kristav went to sleep relatively quickly. no tantrums today, no real problems when he was home. he got in the tub without an argument, which was nice (he's been fighting the whole bath time thing for about a week or two now)




i'm not sure if anyone other than someone in a similar situation can understand how much of a relief it is to have days where its so easy. most days are just filled with the struggle of getting him to keep to the rules, or to eat, or in the tub, or please don't hit your sister, or trying to keep the "spinning toys" out of reach, and so on. my son is EXHAUSTING without even considering that he RUNS practically everywhere, and climbs just about everything, and bounces on the bed and jumps from the dresser.




today was nice. we had a break from the kids and we had a relatively peaceful evening once they got home. i wish there were more days like this.

posted by domynoe on 4:54:17 AM | note me

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7.2.2000

off the medication i may have a wild boy, but he is eating again. his doctor should be back from vacation soon and we can figure out what to try next. this week i get an ekg and next week a neuro psych to see if i am add also. middle sister goes back to school and kristav is asking if he does too. the answer of no doesn't please him too much. so it will be a long couple of weeks with his sister going back to school and us going to the doctor offices to have mom checked out. hopefully it won't be too bad.

posted by domynoe on 11:52:38 PM | note me

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