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Post by Jodi on Mar 25, 2005 23:43:04 GMT -5
I know it's hard trying to choose the right placement. I've shared in this forum my concern transitioning from Kinder to 1st grade in Sept. of this year. What I have learned from others at this site is to go by what you know about your child; her strengths and her weaknesses, and then check out the programs and see what you think would be the best fit. Like CC said, if what you pick isn't working like you thought it would, you can always change. It sounds like she is doing very good, and I'm sure you have had a lot to do with her success. I wish you well in this process... I know it isn't easy! Jodi
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Post by Jodi on Mar 24, 2005 16:54:26 GMT -5
More on Ryan ;D my favorite subject!
Ryan was born on June 13, 1998. I knew about his condition 5 months into the pregnancy via amnio. After the shock wore off, I researched, which also broke my heart. The great thing about knowing ahead of time was we were able to prepare for the worst at birth. We had been told he could have a cleft palett and a cleft lip, and possible heart complications. Fortunately, he was pretty darn healthy. He had jaundice, and the pediatrician thought she heard a heart murmur.
At six weeks, we took Ryan to the heart specialist. He had 3 small holes in his heart, but the doc. suggested we wait a year to "see what happens". He said they were small and didn't think it was worth putting him through any surgery. A year later, all three holes had closed on their own.
Knowing about Ryan ahead of time gave me time to plan. I had him on a Saturday, and by Monday morning I was already on the phone to our regional center.
He had infant stim, first in home, then in a clinic, then home, then back to the clinic. He received speech at about 9 months and ot when he was about 6 months. His OT was the BEST!! She would motivate Ryan by doing all kinds of crazy things. Ryan loved when she imitated Elvis -- she would put on a pair of dark sunglasses and say "uh-huh" like Elvis. He would crack-up. She would hold the glasses just above his head so he was "working" by reaching to get them. She would help him place them on his face, and then she would say "uh-huh" again - and we'd all crack up.;D Don't you just love when someone truly loves their job, and that job is working with your child?!
He started receiving PT about 18 months. Both the PT and OT said that Ryan was the worst case of hypotonia they had ever seen. We have seen this play out by Ryan's struggle to crawl, walk, and talk (still struggling with talking).
He was a very healthy baby, but very picky about what he would eat. Spaghettio's and baby oatmeal were his staples. He had a horrible time learning to feed himself. I took a long time, and (just like the potty training now) I wondered if he'd ever get it. Oh, the messes. We learned to forget the mess and focus on the task (which wasn't easy - my mom took care of Ryan during the day while I worked, and she didn't have a whole lot of patience for messiness). She said she still finds dried spaghettio's in her kitchen stuck in places she'd never dream of!
He started walking at about 19 months - really well at 24 months. We cheered Ryan all the time - no matter what he was doing. I remember him taking ONE step, then he would smile, clap, and look at us like, "well, clap!" Too cute!
We had a couple of scary incidents. Ryan got out of the house once, and we live on a very busy street. My husband had just walked to the back of the house, and when he came back - he was gone. He ran outside, and there he was, in the middle of the street!
My mom was watching Ryan one day, and had stepped outside for a second - Ryan shut the door behind her and she was locked out. She had the cordless phone for some reason and called me. She was crying saying that she saw Ryan with a pair of scissors and he RAN away from the door into another room. She had a baseball bat, and was trying to break a window, but was so freaked out, she didn't have enough strength to even swing the bat. Luckily I was about two miles away in my car already and (stupidly) RACED to get home. I went into the living room, and there on the carpet was a pool of something red. I found him in the back of the house, looking at books - unharmed. He had dumped his juice out on the floor!
We have since moved to a very safe area, and have keys hidden outside... just in case.
Ryan enjoys going to baseball games, bowling (one time he threw his ball in the lane next to ours - and unfortunately they were "serious" bowlers... they looked so ticked off - and I said "give me a break - lighten-up, he's a kid!" They were much nicer after that). He REALLY likes to sing! Although it's not much you can understand, but he knows the words to so many songs. Last year they had a play at school involving songs and dancing and to this day Ryan will perform for anyone who will watch every song and every move! He really enjoys reading, and looks forward to story time every night. We usually read 3 books, and when we ask him to pick out three, he will always bring us 5 or 6. Dr. Seuss' ABC is one of his favorites. He reads the "Big A, Little A" etc. and we read the rest (sounds like "ig A wo A" - close enough!).
He enjoys school but outside of signing computer and slide, we really don't get out of him what he does. Forturnately the aid writes everything down, so I can ask him things like, "did you play with Andrew today?" and he smiles and says "ess".
He has some rituals that have become a family tradition. For example, before going to bed, and before leaving for school, we all must give eachother a family hug and a family kiss. When I'm in a hurry and trying to run out the door because I'm late, Ryan will say "bye" and then call his brother and dad over to start the tradition. I love that because Ryan reminds me about what is important.
Wow, I think I've gone on far too long. I would love to hear more about Olivia too!! I haven't cracked-open that book yet - hopefully this next weekend.
Jodi
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Post by Jodi on Mar 26, 2005 20:42:45 GMT -5
Yes... talk about wanting to pull your hair out - I'm almost bald over this one! All these books out there, and not a single one with detailed, step-by-step instructions LOL! We are kind of back on track. Only a couple of small accidents in the past two days. It's definately better than it was a couple of months ago, and I guess that's what is important... moving forward ever so slowly... but moving FORWARD! Jodi
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Post by Jodi on Mar 24, 2005 13:57:48 GMT -5
Well, I don't know if it is a sign of independence or physical inability - and I guess that is what makes me crazy. If I knew he couldn't do it because he physically gets the sensation and then it goes away, then fine... no problem. If it is him just taking a stand, that's fine too, I just go crazy not knowing for sure "why".
So, I AM a CONTROL FREAK, and that certainly doesn't help things at all. But, I do realize this is all Ryan's timing. Just like sitting up, just like walking, when he is ready... (just have thoughts of wiping his bottom when he is 30 HAHA!!).
Jodi
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Post by Jodi on Mar 24, 2005 11:11:06 GMT -5
I'm so discouraged! Ryan was doing so good with his potty trianing. He had gone 3 weeks without one accident, including at night.
Well, that streak came to an end yesterday. He had not one, not two, but three accidents (two big ones). I just don't get it. At one point my husband asked him if he was dry, and he said "wet" - at least we know he understands - but it's just so frustrating - three years of trying to reach this goal (he is 6 [7 in June]).
He was dry this morning, so maybe he will get back on track. It's so hard when you allow yourself to get your hopes up, and then experience the set backs.
Jodi
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Post by Jodi on Mar 23, 2005 13:42:47 GMT -5
Last night I attended a meeting put on by the California Department of Education, Special Education Division at my school district. All parents of children involved in Special Ed. were invited, and I had my laundry list of issues I wanted to discuss. There were about 20 - 25 parents in attendance. The state's rep. (a consultant) was late by about 20 minutes. We were informed that the meeting would not be extended past the posted time (funny we get punished for their tardiness). Anyway, the make up of those in attendance was about 90% Hispanic, 5% Asian, and 5% Caucasian. I heard at least five parents state that they called several weeks ago and requested an interpreter. Of course there was none. One of the state consultants asked a young girl, maybe a junior in high school, if she would try to interpret. She reluctanly said yes. Throughout the meeting people would pause to give the girl time to interpret. There were many times when she didn't interpret at all, and the parents were starting to get frustrated. After about 45 minutes, a parent volunteered to take over. The young lady was thanked and we applauded her efforts. During the evening, I realized that my laundry list paled in comparison to those issued raised by other parents. Many had their IEP's completed before they even showed up to the meeting. Several were supposed to be receiving services, like speech, but weren't. Many parents expressed concern that their children were placed in severe classes, and there were no expectations of their children. It was heartbreaking to listen. Then something AMAZING happened! The young girl who was doing the interpreting earlier in the evening stood up. She stated that she was attending an RSP class in high school, and that the teachers treat her like she is "stupid". She said they don't give her enough homework, and she isn't learning anything. She said she feels terrible about it, and that she asks the teachers to giver her more work. They laugh about it and basically ignore her. I looked at the faces of the state consultants, and grinned because they were in shock. I loved the fact that they saw her and "expected" so much of her by asking her to help out and interpret. She had no visable disability, and so she was treated that way. So of course I likened that to my child. DS is a double-edged sword. On one had the physical appearance of my child protects him in a way because people will tend to be more "on guard" and watch out for him. However, he also misses out on opportunities because expectations are automatically lowered. Kudos to that young lady for being brave enough to accept the challenge of interpreting, and extra kudos to her for being so assertive and addressing her concerns to these people! Jodi
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Post by Jodi on Mar 24, 2005 13:42:38 GMT -5
MB - I like your 'begin with the end in mind' approach.
Ryan's first year in kinder was more like his body was in the class, but he hardly participated in group activities or did any independent work. And this is what they called "inclusion". His aid was always beside him prompting.
This year his teacher includes him much more. He participates in circle time, story time, calendar time (the best to his ability) and much more. The teacher has taught sign language to the class. One time when I went there, a child was telling Ryan to sit down on the carpet while using the "sit" sign. It was great. When its time to work in their journals (usually dictation or independent writing), Ryan will copy sentences from strips.
He gets speech and ot therapies. Speech is twice a week, and that is the only time he is out of the class. His ot guy is wonderful, and has actually helped the team to be mindful to get Ryan to work more independently.
MomofRussell - I agree with you! I guess that what we are doing is working, because Ryan is progressing. I'm a little worried about 1st grade, but what the heck. I guess we try it out and see how he does.
Ryan has a wonderful aid this year who gets it. She is willing to try anything for Ryan. I sure hope we get to keep her for next year. I worry that, since she doesn't get a great deal of support and is still the primary teacher to Ryan, that she will burn out.
Thanks for sharing your experiences with me. I should be meeting with the program specialist in the next two weeks to visit classrooms and see what our options are.
Jodi
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Post by Jodi on Mar 22, 2005 21:11:35 GMT -5
How funny, we just bought the book and it arrived yesterday!!! I will let you know. How old is Liv? We've been using the "Teaching Reading..." book (modified by me of course) to Ryan for about a year now. He is doing pretty darn good! He can read simple sentences like "Mom likes to play with Ryan" "I see a cow and a pig" etc. Can I borrow your facilitator??? Jodi
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Post by Jodi on Mar 22, 2005 19:20:51 GMT -5
Thanks MB. Sounds like a great plan.
Sometimes I doubt myself and whether or not I'm making the right choices for Ryan.
It's a learning process. For instance, we started using sentence strips to teach Ryan new reading words. If the new word was "cow", then a picture of a cow appeared below the word. Unfortunately, they tried to teach him the concept of less/more with this method. The end result of that was a sentence like :Mom has more milk than Ryan. Under mom was two pictures of milk, and under Ryan was one picture of milk (but no picture of milk under the word milk which he didn't even know). I explained to his specialist that this was probably confusing, and more of a mathmatical skill than reading. So we don't use that anymore.
Yesterday they send home a worksheet of the seasons. Since we are in So. Cal, the only seasons Ryan knows are Sunny and Rainy. Haha! Needless to say we didn't even attempt the sheet, but we talked about "sunny" and "rainy" instead.
Jodi
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Post by Jodi on Mar 22, 2005 16:43:53 GMT -5
I almost laughed when I typed that. Is there such a thing? Seriously though, I'm curious if there is anyone out there that feels their child is having a good experience with inclusion, and would be willing to share what it is they think makes it work so well. Ryan is getting ready to transition to 1st grade (IEP is a little over a month away). I was told last week that Ryan was the first truly "included" child with his level of disability. He participates with the class, but not on everything (most math concepts are too difficult). When it's over his head, they either work on his goals, or do something along the same lines, just more at his level. When we had the first IEP, I asked for the "full-continuum of services" and they looked at me and said "It's either SDC or nothing". I ended up getting him into a regular head-start program for a couple of years. He's been in the same kindergarten class for two years (in his second year). Ryan's coordinator has learned over the past 3 years how to work with his aide, teacher, and therapists in adapting his school work so that it is meaningful to him. We still have a long way to go. I'm a little surprised that they really don't have a great deal of experience in this area. They have advertised for an inclusion specialist at the District for more than three years. Wonder why no one wants the job? Anyway, thanks again for your valuable input! Jodi
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Post by Jodi on Mar 22, 2005 17:09:22 GMT -5
Still crying. Thanks for sharing.
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Post by Jodi on Mar 20, 2005 21:21:26 GMT -5
Ryan, my beautiful 6 year old is ALMOST potty trained. We started 3 years ago... OMG - time goes by too fast.
We started in preschool with pull-ups and the method was trying to catch him before he went. We also used a picture schedule. About a year ago, Ryan seemed to be able to have some amount of control but it was inconsistent. We thought it might be an issue that he couldn't feel when he was wet so we switched to underwear. That was fun... and messy sometimes. We tried the "one day" training where you focus on potty training, load him with liquids, and do dry pant checks. We actually tried this a couple of times. We all got very burned out on the whole thing about six months ago.
We started using a timer again, and we would take Ryan into the bathroom every 45 minutes or so. Then, we decided to wait longer. Who has to go to the bathroom every 45 minutes anyway??? For the past three weeks, Ryan has had only a few accidents, and has stayed dry almost every night. Yippee!! That leads me to today... here's the big question... do you have any ideas on how to get your child to initiate going potty? Ryan's verbal communication is very limited, he signs "potty" but we cannot get him to initiate. We can go 3 to 4 hours and he won't go on his own (but at least he stays dry!!). He is so proud of himself. I ask him every hour or so "are you dry" and he says "rye" with a big smile... I love it.
On a side note, Ryan woke up early this morning and he pointed to his throat. I asked if he had an owie and he said yes. Then he said "poopoo". The funny thing is he didn't have to go poopoo, he just said that to get to the bathroom so he could point to the medicine we usually give for a sore throat. It amazes me sometimes the hoops he will jump through just to get me to understand him!!
Thanks in advance for any suggestions!
Jodi
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Post by Jodi on Mar 20, 2005 21:30:56 GMT -5
Thanks for the welcome. I always enjoy communicating with moms who share similar experiences.
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Post by Jodi on Mar 20, 2005 14:51:10 GMT -5
For those of you who want to read want I say, you can go to www.ndsccenter.org/events.asp and scroll down to IDEA 2004 SUMMARY. I think it does away with benchmarks (short-term goals), if progress made is sufficient to attain the goal at the end of the year, team members being excused from the meeting if the issue discussed is not their area of expertise, pilot programs (multi-year IEP not to exceed 3 years; and paperwork reduction) for 15 states), and some due process rights (resolution session, attorney fee's). I guess what I am mainly concerned about is does it effect FAPE LRE standards. For instance, in terms of benchmarks no longer being a requirement, what if I suggest that benchmarks are "appropriate" because in my son's specific case it helps him by helping the team effectively educate him? I know I'm just trying to get around the new law, but if it is truly an individualilzed plan, then it can work, right?
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Post by Jodi on Mar 20, 2005 13:40:01 GMT -5
I read up on this at the NDSC site. Does anyone know how/if this will effect us in California?
My 6 yr old son is fully included in kindergarten (2nd year), and his annual IEP is comming up in May. The district is pretty good about Ryan, but they lack an inclusion specialist who really knows the true meaning of inclusion and how it should work. Thankfully they let me make suggestions and most of the time we collaborate very well (they should pay me the big "inclusion" salary haha).
Anyway, I know the new laws don't go into effect until July, but I'm just curious if there is anyone out there who is really up on this stuff, and can, in lay-mans terms, explain the major consequences/changes to me. I've joined the district special education task force committe, and we meet next month. I'm one of the parent representatives, and want to be clear as possible on this matter.
Thanks for any comments!
Jodi
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