Thursday, May 27, 2010
Jlula is becoming quite the self stimmer, and having more repeatative behavior. She was using a small plastic bucket shovel to tap on her lips, granted throw low muscle tone in the mix, did this for a good 45 mins, tried unsuccesfully to distract her. She would go back to get the shovel, I finally put it away, figured 45 mins was long enough. Now she has been stacking 2 small can of black olives over and over for 35 mins, just loving it. She also methodically open the velcro straps on her sneaks, open them closes them back and forth to each sneak can do this for quite a while. Oh well, could be worse, at least she's not hitting herself. Today Matts school has a a music assembly, where they sing Patriotic songs in honor of the Vets sicne it's nearly memorial day. We live near a National Park, the Old North Bridge in Concord, MA, this is where the Revolutionary war began Apr 19, 1775. It's such a nice park to walk around, and alot of history. Julia and I went there for a walk yesterday morning. I'm looking at the statue of a Minuteman, thinking, the local Minutemen-Patriots began their fight for their freedom from the British Monarchy, and than I heard a loud sound, knew it was a Fighter Jet from the local Air Force Base, it flew over our heads so fast, low, and loud that I covered Julias ears. I thought this is where our freedom began, and continues on today. I know America isn't perfect, but I'm proud to be an American, God bless our troops, and God bless America.
Wednesday, May 26, 2010
Julia has a new dental surgery date of July 23. Frank has that friday off from work, no worries about help. Julia has an appt at 3:15, June 24 at Childrens-Boston for the International Adoption/Developmental Dr, and it's alos the first day of the Extended School year at the Spec needs camp down the street. My friend has the day off, she will pick Matt up there, and hang out here with her daughter, Ashley, and Matt until Frank gets home. Matt will be so excited. This will be the first day that Julia will be at Camp nearly all day. Currently she goes to school 2.5 hrs in the afternoons. Camp is from 8:45-3p, they all ready have an aide for Julia. I presume that Matt will have the same aide as last summer. Julia will see the opthamologist fri, be interesting. It's either a brain-eye connection, but it seems to be getting worse, she is nearly walking into walls in the house,which is odd for her becasue she can navigate home pretty easily. I have to protect her and keep my arm around her shoulder to direct her as she will walk into almost anything when we're out, and that's with her head up, as she prefers to look at the ground when she walks. the first eye exam was a battle, think friday will be too as Julia does NOT like anyone to touch her face at all. Battle to wipe her nose, get her hair out of her mouth, clean her face, etc. Matt is doing well still fully included in his 2nd grade class, Ashley is doing great in 3rd grade. School is over next month. this school year flew by.
Tuesday, May 25, 2010
I feel better now. A friend stopped by, after we had passed one another while driving. She lives down the street, has a teen son with spec needs, and a daughter Ashleys age, so they're friends. She is more than willing to help next time something comes up, she's very nice, even to get Matt at school, he would be thrilled. She and her husband are going to Nice, France next week, he is traveling for business, and she will go, be there for a week. Her parents are staying at their house, I'm so happy for them, as they deserve a break, and time together. We'll be back up for my friends parents, as their kids know us well, and we're about 3 mins away.
I just cancelled Julias OR dental appt. One of my wonderful friends, who is an RN was able to switch a day with one of her co workers, for Julias dental surgery and help us, as she was about to go speak with her boss, this co worker deseided she couldn't switch. Our parents can't help that day, I really don't think they want to help anyway. All they would have to do is give Matt lunch, help him pull up his shorts and undies if he had to go to the bathroom, and sit on your butt with a remote, or at the table in our yard. Frank can't take the day off, and I can't bring Matt into the OR waiting area, or the PACU. We basically have no help, my siblings work, I didn't bother to ask them, since they usually say no too. Our siblings couldn't even make it to Ashleys communion, why the hell would we ask them for help anymore. I have to stop being so nice to my family, help them, it usually comes around to bite me in the ass when I need help. I have been in contact with the OR coodianator at Childrens to get Julias teeth done, and I'm sitting here in tears because her teeth suck, rotten, decatying, cavities in every molar, and had to cancel when all was in place for next week. I guess I'm just jeolous of some of my friends that have kids with DS and other special needs, who have families that help when they really need it, and that not in our case. I know our kids are our responsibility. Off my soap box. Have to bring one of our very old cats to the vet today, as I couldn't find her the other day for the previous appt and she is an indoor cat. She's about 20, so I was hoping she wasn't dead under a bed somewhere. Brought the other 14 yrs old cat last week, he has slight elevated liver and cardiac issuesnow. At least the 7 yr old awesome black lab mutt is very healthy. Beautiful, Julia just refuxed a huge puddle on the rug, go clean it, wipe the tears, and move on.
Tuesday, May 18, 2010
Julias dental Or appt is still in the works. My mom and Franks folks can't help watch Matt for a few hrs, until our friend can get Ashley off the bus. Matt doesn't take the bus (as of now) so the parents can't pick him up, it's so easy to get from school to home, nearly a straight shot, about 7 mins. So a great friend of ours is an RN, and she has offered to try to switch with someone at her job, she will get Matt at school, and get here to get Ashley and her daughter off the bus, stay here until Frank gets home from work. She and her husband were so supportive to Frank last summer while I was in Ukraine tying up the loose ends. She really went out of her way, and I will always truly appreciate her kindness, our kids really like her alot, especially Matt. Otherwise I would have to cancel Julias Or appt, as I can't bring Matt into the PACU. Julias language skills seem to have really developed alot this past week, she says alot more words, as well as she can say them, and is following directions in English very well lately, Look at the time, time always flies while on the computer, she needs to get to school.
Thursday, May 13, 2010
Julia has her dental OR date for June 1. Matt doesn't take the bus yet, so I drive him back and forth to school. We have to keep him out of school that day, as I can't think of anyone that can pick him up and bring him home. A friend has said that she will watch Ashley and Matt, but she works until 3p, her daughter and Ashley are friends, and they are on the same bus, so she will get the girls and babysit until Frank gets home from work. Hopefully Frank parents will babysit Matt from about 11 to 3:45. My mom is having a breast biopsy 4 days earlier, and doesn't want to help me. So, I'll try one more friend, and maybe Matt can hang out with her, and she could maybe bring him home. If Franks parents, my friend fall through, guess I'll have to cancel. the OR is booked for monthes out, and it could be possibly 4 monthes from now. I'm praying Frank parents can hang out with Matt for a few hrs. Speaking of Matt, this is so cute: His aide and teachers have deceided that Matt should go in the main door to school just like all the other 2nd graders. He walks in with some kids from his class, and the aide walks behind him. This morning, I got to school before his aide, I parked, and brought he and Julia to the school sidewalk, waited for her. Soon 1 girl and 1 boy from his class, walked up to Matt, "c'mon Matt, come with us", he's walking in the middle of his friends, the aide and I are walking behind the kids, the little girl rests her head on Matts shoulder as they're walking, and he put his arm around her shoulder, so damn cute. Reminded me of those cute greeting cards with the kids pics in black and white. The aide and I looked at each other, "aww". So great to see Matt walking into the main door of school with his friends. He has been spending all day fully included in his 2nd grade class, except for pull out services. I'm so proud of him. I also requested that his current aide can move on with Matt to 3rd grade, she wants to, and so does Matt, and she will for 3rd grade, I'm happy about that. His aide this year has been great with him, and he knows what he can and not get away with, she really likes Matt too. As for Julia, this afternoon is her meeting for next yr school placement. We have all ready deceided what we want her plan to be, and ALL DAY!! Yesterday, I met with the Psychologist that was to administer Julias neuropsych test. He wanted input on her before that day. He asked a ton of questions, and than did a parent questionaire on your child. I guess I'm used to Julias behavior and delays, until I get questioned about them. After answering the Dr's questions on this test, I thought, Julia sounds like a 14-18m old mentally and physically. I asked him if that was qwhat he thought and he said yes. So since Julias is so significantly delayed, I can't have the test done with this Dr, as his tests are for kids 3yrs and up, mentally. He asked if Julia could do any testing as a 3 yrs old, "no, I don't". He said he will call around, speak with colleagues to see what can be done, and will call me in a few days. I also asked him about the social, people in her world, and her palce in the world paer of the test I answered, and he also felt that Julia most likely ahs autistic tendancies as well. I told him that her Psych Dr from the hospital said the same thing. The Dr I was speaking with asked me who her Psych Dr was, and I told him, he said he did his residency with Julias Psych Dr, small world. So for now, no neuropsych test in the works, until we find somone that administers testing to children 1 yrs and up. The Dr mentioned another Childrens Hospital about an hour away that does this. Ashley has a softball game this evening. The other night, I was standing with another mom, and Julia was in a stroller, Matt was sitting in a chair with our friends husband. We were standing at the edge of mulch in the driveway of the town housing apt bldg, as the field was right in front of it. This woman from the bldg walks over to us, and tells us "the older women from the bldg want to tell you that your trespassing, and if you even try to put chairs out, they will call the police" What, and she repeated herself, WTF! So we didn't open our seats. I called housing the next day, and the woman that I spoke, said I have no idea about this, I will find out who was sitting in the looby tues evening from 6-7:30 during your daughters softball, accept my apology, and it's completly acceptable to put out chairs where you were" Like Matt can stand for 90 mins, technically we were trespassing, but out in the middle of the driveway or being loud and obnoxious. Ashley will be making her First Communion this saturday, she will look so pretty.
Tuesday, May 11, 2010
I deceided to show Julia more pics of last summer at the orphanage, to see of more reactions would happen. I came across more pics of the orphanage, pics of her, the bldg where she lived, the donkey (yes, you heard right, that would wander the grounds, 2 of them to be exact), she didn't see anything, minimal emotion. Than came across pics of her groupa, the group of the kids she was with, and the caregivers. When she saw these pics, became so sad, her eyes were welled up with tears, didn't say anything, just stared, her chin started to quiver, and tears started down her cheeks. She wasn't aggitated like the previous post, maybe she really did have some kids that really liked, and hadn't thought of them until the pics I showed her. One awesome little boy with Ds, blond, blue eyes, who was also adopted by a great mom and now lives in Kansas, he was the whole pic, extreme close up, but she started to laugh when looking at him, so he must have made her laugh sometimes, we got a kick out of him too. Have to bring in the dog, she's barking her head off for about 4 mins, sweet thing, spoiled black lab mutt.
We think that Julia is getting a latex allergy, as the regular band aids give her a mark that gets so red, and can still see the mark a week later, not red, light beige. I bought first aid paper tape, and latex free band aids for her weekly injections. I must say that her Hep labs are still going well.
I was just looking at a blog where a family had just adopted 2 girls from the same orphanage that Julia was in. the mom took alot of pics from Kharkiv (where we spend a month last summer). She took pics of the orphanage, I showed Julia these pics. Before she walked to the computer, she was babbling to herself in a normal regular voice, tone. She got a look at the pic of the bldg that she lived in before we came along. I wondered if she would have any reaction to the pic, any memories, anything, as she was sedated. She looked at it, started pointing at the pic, started yelling and saying something as I had no idea, maybe Russian for all I know, than backed away really fast. Doesn't seem like good memories to me, if she reacted like that. Than went back to playing with her toys, babbling like normal. Tomorrow, I'm meeting with the Psychologist that will give Julia a neuropsych test, so I can fill him in more. The same Dr has given Ashley and Matt these tests too. Julia will be way more difficult as she is basically non verbal, responds to English so that's good. She can say a few words, but hard to understand if one doesn't know her. I asked him if he was up to the challenge, and he is. We just want to know where she is mentally and developmentally, get a baseline. On thurs have a school meetingfor Julias placement for next school year. There is a school in town where she can get ABA therapy for the autistic tendancies, stay with the SPED teacher she is with now and put Julia in with first graders, so they can model good behavior for her, and try to do ehr work in that class. Obviously she is doing pre school or lower work, but at least she would be in with her peers. What we have deceided is that, I have talked to Matts SPED teacher, who I also really like, and she is more than willing to take Julia into her class, she can do the ABA with her, and the behaviorist that goes into her classrooom also does ABA, I know her also quite well, as she has been helping us with Matts behavior. Matt has done so well this school year, that she wants to have Matt 90-95% inclusion into 3 rd grade. She feels that Julia and Matt can be pretty well seperated due to schedules, and with him having so much inclusion, Julia and he would rarely cross paths in the SPED room. If school feels that Julia isn't ready for a full day, will fight that one too. She is going full day to the summer program for kids with special needs down the street from us, 8:45-3, she will be 8 in Nov. Than we will have to find somewhere she can go all day. Anywho, speaking of Julia, need to get her moving and ready for school.