|
Post by Jodi on Mar 20, 2005 13:24:47 GMT -5
Happy Birthday Russell!
I'm new to the site, and enjoyed your story. I can readily identify with you! I too found out about Ryan having DS about 5 months into the pregnancy. Ryan is 5 (will be 6 in June) I also have another son who is 12.
I lost two pregnancies prior to Ryan. When I found out I was pregnant, I started getting progesterone shots because my levels were dropping (just like the other pregnancies). Funny, my body was rejecting Ryan, and I was fighting to keep him. I had about one month of pure joy/no problems in the pregnancy (the 4th). My levels were great and Ryan seemed to be doing fine.
I had a melt down after I found out (lasted about 2 hours). My heart broke because I felt like Ryan wouldn't be loved by others like I will love him. My sister-in-law was learning about teaching children with disabilities, and unfortunately (or fortunately) had a ton of information regarding DS. I was freaked out because all I read about were the things that could go wrong. Geeze, the kid had so many strikes against him and he wasn't even here yet. My husband was mostly quiet, but supportive.
My dad's younger brother has DS. He took the news real hard, and even suggested that I terminate the pregnancy. Hahaha!!! Well, I too comforted everyone else. I was already advocating for Ryan. "What's with these people", I thought to myself. I felt like they didn't think Ryan was worthy of a life, and that really hurt and ticked me off! I quickly educated myself, so I could educate others.
He is in kindergarden right now (2nd year) full inclusion with an aide. His speech is significantly delayed. He is reading a little, participating in spelling tests and overall is just an awesome kid!
I look forward to posting my "help" questions here. There seems to be a lot of great advice out there!
Jodi
|
|
|
Post by Jodi on Mar 20, 2005 16:37:39 GMT -5
How does someone decide when a life is not worth living? We suffer so much and deal with horrific problems. To actually make that kind of decision blows me away.
I knew about Ryan having DS before he was born (5th mo. of pregnancy). I had the Dr., nurses and family members suggest to me that maybe it would be best to end my pregnancy (granted not all opinions were like that). I was told he probably would have a cleft palete and lip and would need to be tube fed (not the case). It was as if they were trying to convince me how "bad" they thought it would be and that would help me make a "good" decision.
Oh my goodness, how do we even begin to rank "quality of life"? I NEVER once thought of ending Ryan's life. I am still mystified over how anybody can say a life isn't worth living. We don't always get to choose our situations, but we do get to have some say in how we handle them.
Jodi
|
|
|
Post by Jodi on May 18, 2005 7:32:31 GMT -5
Thanks to all of you for your encouragement! It's been a bitter pill to swallow, but each day that goes by I'm feeling better about it knowing that we have already moved on.
In looking back, Ryan's behavior specialist was trying to tell me indirectly a year ago. She said something about education has many floors (grade levels) and for each floor, there are many rooms (different settings/options). I remember thinking - "yeah, and this is where he belongs". I'm so stubborn sometimes (maybe that's where Ryan gets it from??). I'm relying on her heavily now, and she has been wonderful in easing my mind and helping me to move on. Ryan's IEP is in a couple of weeks. It should be interesting to see what the team comes up with.
Thanks again for all the hugs - I so needed them!
Jodi
|
|
|
Post by Jodi on May 17, 2005 15:37:55 GMT -5
I wanted to share my inclusion experience for the benefit of others.
When Ryan was transitioning to the school district at 3, he was delayed, but was funcitoning pretty well. They suggested a SDC where there were severe behaviors, and in all honesty, I was shocked that they thought this was the appropriate placement for him.
I researched and found a headstart program that would take Ryan with a 1:1 Aide. I was also offered a SDC class with high functioning kids, but went with HS.
There he was for two years with a 1:1. I often talked to the aide who complained that they didn't really include Ryan much and didn't expect enough from him. I tried to encourage the "team" to get training and include Ryan. I left hoping kinder would be better.
It wasn't much different. He still had a 1:1, who pretty much was Ryan's teacher. Looking back it is like he was visiting the class on a daily basis, but not an actual student.
To make a four-year long story short, I know have made a terrible mistake. I believed that Ryan was experiencing inclusion, but now I realize it was more like he was sitting in the class with an aide, but not really participating at all. In the rare instance he did particpate, he would have behaviors which would require his removal from the activity about 80% of the time. The district gave me what I asked for, and I think they were intimidated by me so they didn't argue. I do know there have been people in the past who have said they didn't think it was the right place, but when we met at the IEP - silence.
Ryan can not function in inclusive kinder. And, unfortunately, even though Ryan has been in an inclusive setting for four years, he cannot even function in SDC right now. His behaviors are crazy out of control right now.
When I first realized this, I felt just aweful. I had a lot of guilt. It's like I was in fantasyland - thinking he truly was functioning all this time, but all along the truth is he has become increasingly frustrated because it was all over his head.
This is going to be a long road ahead. I'm convinced the blinders are off now and I see things for what they really are. It will be hard watching Ryan struggle to learn how to make it, but we are all positive that he can do it and that he will be much happier after the transition.
I'm going to try to keep it real now and save fantasyland for when I visit the mouse!
|
|
|
Post by Jodi on May 14, 2005 19:53:16 GMT -5
I too had the amnio at about 20 weeks. I was about 22 weeks when I got the results. I felt like I had to know and I couldn't wait. When I did get confirmation, I cried about the whole thing. I was willing to accept whatever news, but I was still sad when I found out. I was nervous that I couldn't handle it. I was sad for Ryan and what he might miss out on.
I soon started looking into everything that had to do with ds. I wanted to offer everything I could to Ryan once he arrived. And we he did arrive, there was much celebrating!!!
Having a child with a disability does amazing things for you. All milestones are cherished. I see the world through different eyes because of Ryan. My focus has changed, and I appreciate simple things like I never had before.
And - I could handle it!
Congratulations to you!!
Jodi
|
|
|
Post by Jodi on May 14, 2005 19:54:19 GMT -5
Awe A!
That's great - are you going to put books back in the drawer??
Great for Russell!!
Jodi
|
|
|
Post by Jodi on May 12, 2005 15:54:45 GMT -5
Today was Ryan's last day at Kinder full-inclusion. Well, actually he didn't even go in for the full day - he hasn't been in school since last Wed. We had a "going away" party. When Ryan walked in the room the kids went nuts! They started CHANTING his name...LOL...it was overwhelming!! The kids formed a "goodbye line" and each one said goodbye and hugged Ryan - too darn cute!!
After we left we went to his new school - we've talked about it but I thought it better to show Ryan. It was great because we were able to go to his new class and he got to meet his new teacher and aides.
Funny, I was submitting the registration papers, and the office clerk kept getting interrupted by the school nurse for a key. What a hoot - she walked over to the nurse, whispered something in her ear to which the nurse replied "oooooooh, yessssss - okay" while looking at me. Now, maybe I'm paranoid, but I think the whole district knows who I am right now LMAO!!!!
Anyway, I keep hearing wonderful things about the teacher BUT - all the comments are coming from the district and it's not like they're going to say... "uh... she's a bad teacher". She does seem pretty good and time will tell.
Ryan was in inclusion for preschool and kinder - so this is very new to me and comes on the heels of a pretty cruddy week. I'm guessing I'll be a nervous wreck by the am, ah but this too shall pass.
BTW - the district mentioned to me about celebrating "inclusion week" in September - I'm thinking that maybe we should change it to something that acknowledges all kids with special needs - not just the one's participating in inclusive settings. Again - if any of you are doing something like this, please feel free to share your ideas.
Steff and A. thanks again for your suggestions and resources. I'll check them out.
PS - Yeah - the BB is back!!!
|
|
|
Post by Jodi on May 12, 2005 15:58:37 GMT -5
Awe that's GREAT!! Way to go Paige!! ;D
Jodi
|
|
|
Post by Jodi on Mar 2, 2006 23:38:25 GMT -5
Ditto what A said!
I too have a different pair of shoes. I found out about Ryan having DS after struggling 16 weeks just trying to hold on to him (complications). I found out through an amnio after a level 2 ultrasound.
You don't know for sure, and until you know for sure, you won't know how to react. I had decided to continue with the pregnancy no matter what the results. When I got the results I cried a lot because the actual news was hard to swallow. I started getting information from local parent groups and sought information just like you are.
Ryan IS a joy and we can't imagine life without him. He is 7, and starts challenger baseball this weekend. He enjoys playing xbox, can read and is learning math pretty well. I won't kid you... life isn't always easy - but when is it with kids?!! I also have a 13 year old son (full blown ADHD with meds) and he and Ryan do the typical annoying things that siblings do to eachother.
The important thing to do is to get the facts and understand what DS is and what it isn't. There are many misconceptions about DS. I found comfort in education.
I wish you well on your journey.
Jodi
|
|
|
Post by Jodi on Apr 14, 2005 19:49:30 GMT -5
Monique-
We did have some trouble with constipation and although I'm not sure it will help, I will share what we did.
Our little guy usta have knots in his tummy his first year. He would try to push, but he was so weak (VERY low muscle tone) that he just struggled so much. We tried juice, mineral oil (clear/tasteless) in his juice, and children's Synocot (sp?) as a last resort. He did eventually get it out, but it was so heartbreaking to see him struggle.
The thing is that I knew he knew he had to go - which is a great sign. He had the sensation, just not the strength. I know someone had posted about not being sure if the child can tell he/she had to go. So I'm just wondering about if it has anything to do with muscle tone/sensation???
I hope you can get some answers that help.
|
|
|
Post by Jodi on Mar 20, 2005 17:01:13 GMT -5
Hi there!
My son Ryan (6 now) was three when we noticed he was having difficulty breathing when he would sleep. I mentioned this to the pediatrician who said that he had to stop breathing for more than 15 seconds to worry. Okay, so about a year later I saw a specialist who immediately ordered a sleep study and two weeks after that ordered a tonsilectomy and adenoidectomy with ear tubes to boot.
Ryan's growth and development was harmed due to the misdiagnosis of his pediatrician... and I let her know too!! He suffered from chronic ear infections that could have also been avoided if the diagnosis was on target. Physically he gained weight (he was in the lower 5th percentile for children with DS at 3) in the first year that put him in the 50th percentile... he's now in the 75th. His speech, although still significantly delayed has improved.
I hope the surgery isn't necessary, but don't worry if it is. It was a wonderful thing for Ryan, and he is so much better off healthwise.
Jodi
|
|
|
Post by Jodi on Jun 26, 2005 21:59:49 GMT -5
Hi Dolly ~ Just wanted to throw in my two cents... Ryan is 7 and his verbal communication is delayed too. You mentioned that he understand things... that is very important! We are often asked "when will he start talking" - heck, when he's ready I suppose. Anyhow, Ryan understands TONS and so we keep teaching. The speech will catch up - but I'm with you - it's tough waiting Jodi
|
|
|
Post by Jodi on Jun 21, 2005 22:17:56 GMT -5
Hi there!
Ryan had a T/A when he was about 3 1/2. He had it done at Children's Hospital in LA. The experience was fine, and he didn't have any complications. I will tell you that he has grown physically and cognitively so much since the surgery. His ENT doc said that his brain was deprived of oxygen for all those years before he had it done, and that affected his growth and development. I'm glad we had it done!
Jodi
|
|