|
Post by TriciaF on Sept 29, 2005 11:13:12 GMT -5
Bringing this around for update and closure.....just wanted to let all of you who helped give me advice and listen to my wanderings/ravings know the outcome. We had a frustrating summer, waiting for ANYTHING to happen...and nothing did. Finally, about 1 week before school started (Aug 8th in our district), the ball started rolling. Long and short of it was that Patrick started school 3 weeks late (we missed the open house and getting to meet other parents), but he is in the wonderful 4 year old class at our home school that I wanted for him, so it was worth the wait and the headaches. The IEP was very rushed and the teacher did not meet Patrick before the meeting. She only wrote his goals the night before. The speech therapist was not at the IEP and we still have not met in person, but had a good phone converstation. We still don't have an OT evaluation...but its in the works. All of this sounds bad...but was OK because....I did spend lots of time working up Patrick's goals and had them with me, so I was prepared if it had been awful. But, the teacher is so experienced and wonderful...that her IEP was just fine. I thought for someone who never met Patrick, it was amazing. All my suggestions were noted and we still have private therapy once a week, so I am not too concerned with his therapy through school. The class is going well, Patrick's only adjustment problems have been behaviour...the same sorts of things that all you unomasers have prepared me to expect all these years , which makes it so much easier to listen to and deal with and leave all that emotional junk (how is this my fault crap) out of the equation. He doesn't like coming in from the playground (surprise huh Steff), he resists leaving his center to go sit and work on any type art or writing project, he doesn't always follow instructions about lining up with the class to go back from lunch, he does the drop and flop.....and he has been making faces at the teachers when they fuss at him. But...he is happy in this class, learning so much.....and becoming loved for being Patrick. I feel that I was respected and taken seriously both at the IEP and within the classroom because the educators can tell that I have done my homework and do have information/suggestions about Patrick's personality and learning style that can help him and them. And....no small part of all that homework has come from six years of listening to all you unomas experts sharing your lives, experiences and children, and the rest of us not being scared to ask the questions (even the simple and dumb questions). THANK YOU ALL SO MUCH. I have dreaded this transition from the minute I heard the term IEP and understood that I had quite a mountain to climb (felt like) in educating myself to advocate for Patrick. It has often made me feel that a big mistake/bad decision on my part could have major, long term, negative implications for Patrick's life (I know this is an exagerated, overblown idea as I can't really absolutely, CONTROL anything and wouldn't want to). When I get too far out on that limb, you guys bring me back to earth. Patrick and God will have the most impact on where he ends up....and I am only co-piloting, no thats not even it, I am really more the navigator,....trying to keep us all pointed in the right direction....checking the weather reports, emergency plans, maintenance and fuel, and listening to the latest news from the other experts in the tower. You guys are my tower, the experts in guidance who know what I'm doing because you've been there. As the navigator, I don't control the flight...and the pilots can still overrule me at anytime! You all have made it so easy and even, dare I say, FUN! It makes me breathe easier to know you are here.
|
|
|
Post by TriciaF on May 14, 2005 6:55:25 GMT -5
Morning guys...no new developments...but something happened I had to share.
I was talking to an attorney yesterday who deals with elder care law, wills & special needs trusts and education law. I was responsible for arranging for him to come give a presentation to our Ds support group.
During the conversation, I mentioned that I had been dealing with the whole special ed thing recently and that it had been very difficult. He asked what district I was in and then went on to say what a wonderful district it was (his wife is a lead teacher in the district). I agreed with him that we have a great district....I went to school here and even the special ed staff is excellent...just not inclusion oriented.
I told him that I just was very surprised at some of the things they were telling me these past few weeks that were clearly wrong and probably not legal (under IDEA). I gave him the example of the comment about not wanting to put Patrick in an off age placement because it might set a precedent and open up a can of worms.
Well....this was so funny....he said....."I won't even ask you who said that, but, you should really pass that information along to the special education director for the district....because she needs to know that some of her people would say something like that." So...and I hope I it won't come back to haunt me....but I just absolutely could not help myself.....I had to tell him..... "But, she's the one who said it"
|
|
|
Post by TriciaF on May 13, 2005 13:14:35 GMT -5
Donnita, The biggest lesson I am taking away from this so far....is don't wait to explore your options. Visit classes as soon as you can....including those outside your school district....and talk to other parents in your school/district that are a bit ahead of you. Find out who the decision makers are and what is available at your homeschool. It really helped me to have a current full speech eval and psychological from someone outside the district to that I could observe the process and have input when appropriate. In SC, Patrick has medicaid outside our income that paid for this testing and the developmental pediatric office that did the testing is well respected by the school district and the psychologist is certified such that he can be hired by the district. This made it much easier to get them to accept both the independent speech eval and the psych report and not decide to retest him. They will only have to add their personal observations to complete his package. I know others here are getting their private pre-schools paid for at age 5 and can maybe tell you how they accomplished that major coup!!
|
|
|
Post by TriciaF on May 13, 2005 12:39:27 GMT -5
Thanks guys for the input!
A- the pre-school special ed director is the one who screened Patrick along with a nurse and speech therapist last week and she was the one who told me point blank that the 4 year old class was NOT an option and when asked why, replied because he is 5. She was very, very firm. So, I called the district office and spoke with the director of special ed for the District. The district director was the one who told me some of the odd stuff we talked about on the Msg board and the same person who called the state dept and has now said that there is not a legal reason to keep Patrick out of the class due to his age. Because she would not normally be involved in all this (I got her involved), she has not met Patrick. So, she is the one who will go visit his current program to observe. I am hoping this is a positive development and not just for show or to find another argument to keep him from being considered for the home school 4 year old class. I do believe that she will be impressed by the program and his current teacher. I think the teacher will support me in that Patrick will be a great fit for the four year old class. Maybe the teacher's opinion will be considered neutral and carry some weight. I am further hoping she will see the great interaction between Patrick and his best buddy, Michael. Michael is three, almost 4 and is typical....he attends because his older sister is in the same class and has special needs. Patrick and Michael are very involved with each other and play great together (I don't think he would get that same interest from 5, maybe soon to be 6 year olds). If Patrick were to go into the self-contained kindy....he would mainstream with those 5, almost 6 year olds for extra ciriculora like music, recess, etc. But, I feel that they would think he was babyish and also not really part of "their" class. I would rather he was part of the all day 4 year old class. Another thing that I guess is a bit different from what some of you experience and have as options....in our district.....all the kindergartens are full day. That limits some of the being able to repeat info in the morning and afternoon in two different classes. Keeping my fingers crossed.
|
|
|
Post by TriciaF on May 13, 2005 7:43:22 GMT -5
Hi guys, Just an update for those of you that have been offering such good advice on our first (and not esp. pleasant) foray into the world of public school special ed. background- in addition to the 4 Transition kindergartens (sp. ed. kindy w/ pullouts to things like music, etc located in other schools), we asked the pre-school special ed dir. to consider as a placement a unique class located in our HOME school called an inclusion class. It is an all day four year old class with a max of 18 students, one head teacher and two asst. teachers. Half of the class is typical and half have IEP's. As Patrick's goals (which have not yet been written-but he is testing in the 2.5 to 3.5 range in most areas) will be pre-school skill goals, not kindergarten age goals, we thought this program had a lot to offer. Patrick is a very young 5-birthday April 21st. The fact that Patrick would have all day inclusion and exposure to typical kids I thought was a very imp. consideration. I also like the idea that the school psychologist and kindergarten teachers would have an opportunity to get to know him as a student in the school before being asked to possibly include him in their classes the following year. I have been told that our home school can only support a sp needs child in reg ed, or reg ed with resource. Beyond that, the only special classes are autistic and TMD in our school. Well-at first we were refused consideration based on his age, having already turned 5. I called and discussed the topic with the district sp.ed. director and she said she would call the state department of education and call me back. We spoke today and she said that she has spoken with them and there is no legal reason to keep Patrick out of the 4 year old classroom. She requested to go visit and observe Patrick at his current school in the next two weeks as she has never met him. I asked permission to go visit the 4 year old classroom while the students were in class and she agreed to email the teacher to arrange a visit. I visited once in the fall while the children were out and talked to the teacher and examined the classroom and children's work. I will go visit the other transitional classrooms as well. After that longwinded story, here is the new point she brought up. She said that while the academic goals of the classes might be similar, she says that the special ed classes are more structured and that the four year old class is of course more like you would consider a four year old class.....alot more laid back. The implication there being that if a child was going to be included in a regular kindergarten class the next year (and she knows that is what I want), he would benefit from the extra structure. Now, that is a good point, I will concede. But, on the other hand, I am thinking that if Patrick is not yet ready for that structure developmently, why try to force it early? And why assume it will not come along when it should? Also, I would assume some of the typical children that would attend the four year old class with him, should he go there, would also be in his kindy and serve as peer models that he knows and will follow in the more structured environment. Have any of you dealt with this issue? One recent experience with Patrick that surprised me was that I attended my Mother's church with my entire extended family and Patrick this past mother's day and surprise....they had NO nursery at all. So, Patrick had to have a trial run sitting in church through the service. At our church...he goes in with the 3 year olds during service. Well, he did just great...shocked me. My nephews little girl, 7 months old, was there and she was babbling occasionally and Patrick was telling her to Shhhh and had his finger on his mouth. That experience let me know that he can do it.....I do believe he did better in my moms church because so many of our family that he knows (3 full pews-LOL) were all sitting quietly as well. Just makes me think that when in reg kindy he will follow the lead of others.
|
|
|
Post by TriciaF on May 13, 2005 21:28:33 GMT -5
Jackie, I know no one in Austin....but I'm sooo happy your peppers are back!!!! Also, I am dying to ask.....what in the world happened with Emily's job to bring about this change? Or since you haven't mentioned it....would you rather not go into it? I know I am being nosy and will understand if you don't want to respond. I just keep thinking about her recent party and seemed she had been adjusting so well. Either way, this past year has really made such a difference for her....with the weight loss and the independece and training. I know she will enjoy having family around and that will probably give you extra peace of mind.
|
|
|
Post by TriciaF on Oct 10, 2002 22:03:51 GMT -5
OK...just wanted to let everybody know that the flylady will be on the Today show tomorrow, Friday the 11th. She is supposed to be in the last hour..but they said you never know. This is pretty cool. I have been enjoying her site and I am a lifelong packrat.
|
|
|
Post by TriciaF on Aug 12, 2002 8:54:27 GMT -5
oh my gosh....you guys I am a slob and a packrat and I get so angry about it at times...but am sooo good at just not looking at my house while I read, watch movies, play with children and pets etc. My motto has always been that it should take no longer to cook a meal than it does to eat it. And since I eat really fast.... But I am forever buying books on cleaning, cooking and organizing....which I read...funny how they don't work when you read them! But, they do make me feel theres hope! LOL....anyways, I believe that maybe I am finally ready to try to SLIGHTLY amend my ways. Since I have become a SAHM, I am really bummed that I don't have people over more....I would really like to have the Ds playgroup over. And.....I refinanced my house and put aside money to cover new carpet, and redo my bathrooms. And the reason this has not happened since APRIL, is that I can't face cleaning out my closets etc. So......maybe you guys have inspired me. I went to that flylady site and signed up. Course I am also signed up with Weight watchers and a gym and look how well they work for me!!! LOL But, with school starting back, there is no time like the present. So...I am gonna give it a shot. Thanks for the motivation. Sue....what in the world is this steam cleaner that will clean showers?? Tell me more.
|
|
|
Post by TriciaF on Mar 16, 2004 0:01:59 GMT -5
Bringing to the top in case there is someone in Florida
ATTENTION EVERYONE: In the interest of keeping this thread smooth, so everyone can create a space on it for themselves, I have gone through it and combined/eliminated most all my replies (and I'll take this one off later).
COULD EVERONE JUST SCROLL THROUGH AND ADD ALL THEIR INFO TO THEIR FIRST POST (HIT THE MODIFY BUTTON) AND THEN DELETE THEIR DUPLICATE ENTRIES (HIT DELETE BUTTON). Remember, you can cut and paste. ~Tricia
REMEMBER - YOU CAN USE THE MODIFY BUTTON TO ADD OR CHANGE A POST AND THE DELELE BUTTON TO REMOVE ONE.
|
|
|
Post by TriciaF on May 3, 2002 13:24:52 GMT -5
A quick addition to a pretty useful site that gives agency information by State: The National Information Center for Children and Youth with Disabilities (NICHCY) go to www.nichcy.org , look under State Resource Sheets...input your state.
|
|
|
Post by TriciaF on May 3, 2002 7:24:23 GMT -5
Guys...in reading the discussions on medicaid, programs, respite, etc...... It came to me that we can help each other so much, but especially if we are in the same area/location and know the system there. So, if we could post (really short) here just where we are located and an e-mail link, then when we need info on our area, we can access quickly. I'm thinking just a long list of everyone's location. I know many of us have that info in the who's who section....but you would have to search everyones entry separately...this would be faster.
To start: Tricia...... located in Columbia, South Carolina
Patrick qualifies here for Medicaid (outside our income) under the TEFRA program.
|
|
|
Annie
Nov 19, 2004 7:18:49 GMT -5
Post by TriciaF on Nov 19, 2004 7:18:49 GMT -5
Annie, I have been praying for you this morning. Can't wait to see a post that says all is over and all is well. I believe that Patrick has the same thing you have (PFO) and if docs decide it needs to be closed will do it through a cath.
We will be keeping you close.....
|
|
|
Post by TriciaF on Nov 11, 2004 19:41:14 GMT -5
Michele, Great story! Thanks for sharing. I had something happen Tuesday. My mom now has out- patient therapy for a broken shoulder, so I take her to therapy on the same schedule as Patrick so I only have two trips a week. Anyway, after therapy, my Mom, Patrick and I went to Cracker Barrel to eat lunch. After we had eaten, the waitress came over and said that we wouldn't have a check because it was "taken care of" by someone in the restaurant who said just think of it as an "unexpected blessing". She was not supposed to tell me who it was, but later, I got out of her that it was a lady who works there, but was off that day and eatting right behind us (She was gone by this time). While I thought it was very nice, it did make me uncomfortable for a moment because I don't want people to feel sorry for us because of Patrick's Ds or my mom (who gets around slowly with her cane). But, the more I thought about how she worded it.....as an "unexpected blessing".....I had the feeling that she somehow knows what an unexpected blessing our children are. She has probably had someone with Ds in her life, too. So......I resolved to feel only happy about it and find someone to pass it on to some day soon.
|
|
|
Post by TriciaF on Nov 9, 2004 0:12:43 GMT -5
Hoping that unomas can make a difference with these lawmakers....our children and ourselves are the ones whose rights these individuals are defining. If this article is correct, we have one more chance before Nov. 15th to be heard by these committee members. So, speak up! I saw two from SC, so I will be shooting off letters tomorrow. As I understand it, there are sample form letters on the NDSS site that you can use. Please take a moment and make a difference. capwiz.com/ndss/issues/alert/?alertid=5951206
|
|
|
Post by TriciaF on May 16, 2005 21:48:07 GMT -5
Just wondering what happened to all the old threads on the Book Club. All the woodbine books on DS and so many others used to be there??
|
|