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Post by Radonna on Feb 23, 2006 20:24:10 GMT -5
I have just noticed alot of posts that compare what we as parents knew to try years ago and what is avaliable now today. Kaden had EI from 3 weeks old and they used the Oregon Model. He had weekly then bi weekly visit's until a year and had additional speech and vision therapy. We also had Infant stimulation with textures and jello and things like that. At two he started Centers and by three was in Preschool. For those in early intervention today how is that different. For Parents with children way older than mine how was that different for your families.
I feel bad when I think there might be something I missed for Kaden. I mean there hasn't been much changes in the types of intervention in a very long time.
I would love to hear all the EI stories just for some research I am going to do for a paper in sociology as well as just being curious.
Radonna
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Post by CC on Feb 23, 2006 21:12:20 GMT -5
Christopher is 13 so i guess he falls under one of those "then" LOL He started EI at one month old. We went to a center twice a week. Each session was 2 and 1/2 hours long. Each session, Chris would see a speech therapist YUP even at one month old, working with sucking and such, then on to eating, drinking out of cup along with sign language and other things. He would also see PT each session, all kinds of things she would do with him, he would get a 1/2 hour one on one with her twice a week. He also would have OT but that was held in a small class room like setting. Once a week there was a Mom's Discussion session which I just ABSOLUTELY LOVED, soo much info I would have not had if not for that meeting. Chris also had private speech and PT one time a week. When he was 3 he graduated into preschool at our public school and all the therapies were held there. Our preschool was only 1/2 day but for Chris I found that was not enough with the pull outs for therapies and being he stopped napping at 3, I went to our school and suggested he attend both am and pm sessions. They had never done that before but we tried and worked sooo well, that others starting doing it Chris at 5 started his horse back riding therapy and has continued that up till this day. I would have to say from the horse therapy came not only great balance but much confidence which led to his skiing, ice skating, roller skating and so much more. LOL girl, K guess that was more then you were looking for but by now you know how I can ramble CC ~
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Post by Emilysmom on Feb 23, 2006 21:40:03 GMT -5
Radonna~ I've really been thinking about this. I remember when I was pregnant with Emily almost 15 years ago.........I met a woman who had a 17 year old daughter with Ds. (I had just been given a prenatal diagnosis of Down syndrome). She was quite an inspiration to me, and her mom answered so many questions for me and made me realize that the news we had just been given might not be quite as bad as I thought.
BUT, I clearly remember thinking this: "if Rebecca is doing THIS well, and she was born 17 years ago when Early Intervention wasn't really being done, then Emily is REALLY going to soar!!! It was very comforting to me as we went through early intervention to keep in mind that we were giving Emily the BEST there was to offer.
We all worked hard...........Emily, her therapists, her parents and brothers and teachers. She started home based therapy at six weeks old. There was a wonderful EI center near us, but I was so afraid she would pick up some germs there and insisted that we go with home based therapy for her first year. We had so many therapists in our home during that first year!!! And, we were told over and over that it wasn't so much the time spent with the therapists each session that helped her............but all the times that we followed through with what we had been taught to do day after day with her. We all got to spend so much time with her doing "therapy", and it really turned out to be FUN! Just a few things we did were oral motor exercises (the Beckman ones), sensory integration therapy, PT, etc. We used whistles and horns and feather boas and pans full of dried beans and water therapy and........... Well, just about all of what we did was the same stuff I read about in the posts here that is being done now. I'm thrilled that early intervention has helped kids for many years........but I'm just not sure that there is a new way of doing it. I guess I'm saying this because I don't think, Radonna, that you (or me or others) failed to do anything for our kids. Don't ever feel bad about that.
Interesting thread!!
Susan
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Post by andrewsmom on Feb 23, 2006 22:06:46 GMT -5
Hmmm... not sure of any differences on this one. A mother I have been talking with lately has a son with DS that is in his late 20's. She told me no services were offered to her. She also said the doctors were shocked when she said she would be raising him at home. They told her she would end up putting him in an institution by the time he was 10. Isn't that sad? I'm glad she proved them wrong.
I agree that EI probably has not changed that much since whenever it first was widely recommended and taken advantage of. I personally don't think you need to worry that you somehow "missed out" on anything. I myself have two older boys...uggg the teenage years.....but I am waayyy too young to be lumped into any "back in the day" catagory....LOL!!!
-Trisha the 29 again poster
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Post by poojamom on Feb 23, 2006 22:12:17 GMT -5
Radonna, We were still in India, when Pooja was given her diagnosis@ 7 months. Other than oil massages nobody helped us in any way. We were so blessed that we could move shortly after her 1st B'day and we started getting information and started her therapy within a couple of months, As Ididn't know how to drive It would take me hours together to get to the centre and stay for the 2hr. session 2-3 times a week. After moving to Oregon, the therapists started making home visits and providing lots of support. EI was one of the best things that happened to us.
Well! In my case I wonder What would have happened if we had still stayed back and never moved here!!! Scary!!!!!!!!!!! believe me, Iam so blessed to be here and though her elementary years are a struggle sometimes to find the right services, Iam sooooo glad to be here.
You didn't need also this info for LOL!
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Post by Radonna on Feb 23, 2006 22:20:55 GMT -5
Poojamom, I am very interested in hearing about the differences in different parts of the world~ I have a theory that I will share after everyone has a change to post that is pretty interesting. I know all about struggle with the elementary school years. My son is 11, he will be 12 in April. I am very glad to meet you Radonna
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Post by ethansmammy on Feb 24, 2006 1:09:50 GMT -5
Hi Radonna, We lived in a fairly remote part of Canada when Ethan was born and the therapies you all talk about were not available to us However I played with Ethan, took him to my friends houses so he could have the stimulation from the other kids etc. basically treated him the same as my first son. When he was about a year old we started a mother goose speech therapy group, where we sang songs etc. They also opened up a snoezelen sensory room (lights, smells, sounds etc) at the hospital, for which you had to do a days training and could then take in your own child - we loved that. We also started a monthly consult with a speech therapist and occupational therapist who gave us ideas on what to try at home. Ethan started a typical preschool at 3 for 2 mornings a week with a support worker. Now at 4 he is having a more formal speech and occupational therapy once a week for a half hour each. (We have moved - military family) I have to say when we moved here we met another family with a little boy the exact same age as Ethan and I was pleased and relieved to find that they were at about the same stage developmentally in all areas - the other boy had had formal weekly therapy from being an infant. I know we aren't supposed to compare but when you think your child has missed out it is hard not to. Ethan will start therapeutic riding in the spring and Kindergarten in September. Hope all my waffle will be helpful in some way. Elaine.
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Post by CC on Feb 24, 2006 1:29:04 GMT -5
OOOPS, sorry Correction to my post above, Christopher's sessions at the center were 2 hours each not 2 and 1/2 K, just wanted to get the info correct. RADONNA, I know you were just asking for what ones get or got for EI and not theories or opinions. You thread did get me thinking... I can only speak for my neck of the woods BUT honestly here over the years EI has offered less and less. 2 of my g/f's sons are both 24 now and both boys had much more in EI then Chris did and from what I hear from new Moms today EI is less even now then what Chris received. Therapies are not the end all, they will not make one walk faster, nor speak sooner, KWIM Chris has always shined in the gross motor so the PT just helped fine tune it more, Chris has always struggled in the speech area and the ST has helped but not been magic. Honestly Chris has had more speech therapy then most I know and continues to struggle hard in that area. So to me right there says something, its not the amount of therapy. K, I think its late and I am having real trouble saying what I am thinking But my theory is each of our kids our born with certain areas they shine in and the therapy helps but my bet is they would still shine in that area KWIM. Some kids with DS just speak better and some say are better in the physical stuff and some say are better in the fine motor. Honestly I am not convinced that the therapies are what have made that happen. Please don't get me wrong I am no way anti EI or therapies I just think its important for ones to hear that say maybe had less offered, that they should NOT feel bad, KWIM. K, I will end here cause I am having trouble understanding myself at the moment LOL. CC
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Post by Jackie on Feb 24, 2006 9:57:32 GMT -5
RADONNA...this is a good thread. I like to talk about our first two years in programming with Emily. They were two very happy years in our lives.
She was born in Denver, Colorado. We begain our program when she was six weeks old. Back then I think it was referred to as Infant Stimulation.
I took Emily three mornings a week for two hours to a nearby elementary school that had an extra classroom. I was in a group with six other moms and babes. There were two kids with DS, one who was blind, and I can't remember the others disabilities. All the kids were under six months of age.
The team leaders were a ST, PT, and OT and a nurse. The sessions were conducted sort of like classes where we sat together in circles on the floor. The PT would show us exercises to increase muscle tone and later when appropriate helped us recognize correct sitting patterns...etc. The ST led us in many games and songs that helped our children with vocalization and later speech. The OT did lots of motor skill training with us. But the neat thing ...it was all fun...and activities we could take home with us and do over and over again. We also had a feeding time where our kids nursing, tongue, and eating patterns could be observed.
This program was especially good for the first time moms who had no idea when most kids without disabilities reached milestones.
I loved the fellowship of the other mothers and learned a lot from just being with them.
We went Monday, Wednesday, and Friday. On Fridays we left our kids alone in the room with the therapists for some one on one time and we went to another location where a psychologist led us in terrific discussions about things like acceptance, family conflicts, thinking about the future, etc. After our "mom" time we went back and the therapists visited with each of us and showed us some things we might want to do at home with each of our kids.
When Emily was 2 we moved to Amarillo where she entered another program that I believe was called Early Childhood Intervention (ECI). She was in this for a year, until she turned 3 and was eligible for an Early Childhood Education (ECE) program (preschool). I did not like the year in the ECI here because the therapist (trainer) came to the house and we took her to PT and ST separately. Somehow it made her disability more work than fun. I realized quickly that for ST purposes what Emily needed was "language stinmulation"...not just simple ST and she would not get this in a one on one setting. So the ST and I put our heads together and the result was a Language Development Program for kids with delayed speech at our state of the art Speech and Hearing Center. It was like a preschool with the emphasis on language development. I believe they still have this program today.
Sadly I think center based programs have gone out the window for the most part...they were excellent because of the fellowship with other parents. They also added an element of "fun" to the therapy aspects and helped us focus on our child rather than the disability.
We were eligible for the ECE program until Emily was ready to start real school. However, since she had the language class twice a week ( which was very much like a preschool) and doing well there, we chose to skip the ECE programs and put her in regular Montessori. She did well there and when she was five we switched her (on the adivce of her future kindy teacher) to a traditional preschool that was run more like a regular kindergarten classroom. She went to this school in the mornings, and in the afternoon we took her to an ECE pre K class to help her make the transistion to public school. It was a great class...every one of those kids went the next year into a regular kindergarten class at their home schools.
I imagine many of you feel like you had an excellent start with your kids too. I know that the help we received and the people and therapists we met early on are what really helped shape our path. It was also through these wonderful people that I developed my passion for advocacy and the desire to promote the ability rather than disability in children.
At age 6 Emily went into a regular kindergarten at her home school and graduated with these same kids in '99.
Jackie mom to Emily now 25
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Post by elenasmom on Feb 24, 2006 10:50:55 GMT -5
Radonna-- Elena was about 6 weeks old when we had our first EI visit. We had PT and OT once a week, sometimes at home, sometimes at the center. At about 1.5 yrs, we added ST and skipped the OT. On most of the visits, the case manager (still a friend) came so talk about what typical is and isn't, and what to look for. I was very pleased with the arrangement, even tho I'm not sure how much they really did for HER. I think the most valuable part was letting ME know what to do, what kinds of toys to buy for certain cognitive and physical functions, what to expect, etc. I loved them and still do. They were very family-oriented, in that they were just as concerned about our issues as they were for hers. And as new parents of a child with DS, we really appreciated that.
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Post by Radonna on Feb 24, 2006 11:58:28 GMT -5
Still all sounds about typical?? Most have the same starts? Some a little more hours than others but all pretty consistent in say the 25 year span we have going here. Please don't quit posting! Still trying to find something that stands out so I can start grouping what would be outdated and what we should keep.
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Post by Radonna on Feb 24, 2006 12:00:12 GMT -5
What would you say about two children going through the exact same program with very different outcomes?? Would it be the parent, the level of disability or the teacher that you would think more at fault?
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Post by steffipoo on Feb 24, 2006 12:27:01 GMT -5
Hi.. Olivias ei sounded almost exactly like Jackies Emily's but she did hers out of a big center rather than the classroom. She went 3 times a week starting at 4 months they did ot,pt,st,oralmotor/feeding parent meetimgs once a week with psych,. They had the child on the touch screen computer at 5 months she LOVED it. She hated that dang therapy ball. Her tummy was so weak then and man she would cry until we started singing to her. the magic song and God love the child if she smiled at MY SINGING!!!LOL....I agree thje comraderie was the best part. Otherwise I may have been in my house feeling WAY to sorry for myself. I felt a sense of gratitude when meetimg other parents who had sooo much more to deal with than us. We saw 3 kids die in less than a year as all the kids in the ei from 0-2 were in the same group and many had really rare chromosomal probs or metabolism probs. From the first day I walked in there I felt this overwhelming sense of RELIEF like PHEW I am home now. She also went 2 and a half hrs a day 3 days a week.I am so glad we chose the center based route just because it got me out. PLUS I HATE strangers in my house. My feeling is MY HOUSE is MY HOUSE. A;lways felt like I had to clean and make everything ohhh so perfect before ei came to my house that the real goals of her therapies were lost. Thats just me ya know... But glad we went this route.Steff Oh yea radonna... Olivia went to ei with a coupled kids with ds. I think its a combo of all the things you said. Parent support, the childs overall ability, and even with the same teachers they all turned out off so differently. I think all the oral motor and teaching the parents as a group how to do stuff with their kids at home really helped all of us as a unit. Good luck steff Hows school. ?
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Post by CC on Feb 24, 2006 12:29:14 GMT -5
For me Radonna, I wouldn't think it was anyones "fault", I would say everyone is different and what might work for one may not for another, KWIM. Thats why the "I" is so important in the IEP. I guess for you question, I might say Hmmm seems like the classroom placement might not be right for the one not doing as well, KWIM. BUT as always its all so individualized with each of our kids thats why I think some kind of programs work well for some of our kids and some don't. I for one hope there will always be options out there and not just one set way to do things, just my thoughts CC ~
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Post by Jackie on Feb 24, 2006 12:33:26 GMT -5
Radonna...I would venture to say it could be due to all of the above. No two children with DS are exactly the same...nor are parents or teachers.
I think one of the main differences now days is that fewer kids are being left out of the system. The concept of EI was fairly new when Emily began so kids were not being referred as routinely as they are now. That is one big difference.
I also think that many of the "names" for the therapies and acronyms have changed. I suppose it makes it some things look new because of that. And I still maintain that the support that the family recieves and the encouragement to work with their child is as important at the actual hands on therapy.
As you probably remember I an an Occupational Therapist. And while I am not working, I still note what is new and promising practice. I don't see a whole lot of new things except perhaps in the area of feeding. ST and OT have really gotten heavy into this and feeding clinics which is great for our kids that have those issues.
Emily had a little friend when she was three that had DS and was still eating nothing but pureed baby foods. Of course now he is a big strapping guy who eats everything in sight...but years ago this might have helped his mom.
When Emily was little I had a hard time coming to the realization that there was no magic glue that would just "fix" DS and sort of make it go away. And I still don't think we have that "glue" yet...but bet we will someday and not so far away.
Jackie mom to Emily 25
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