- My Forums
- Tiger Rant
- LSU Recruiting
- SEC Rant
- Saints Talk
- Pelicans Talk
- More Sports Board
- Fantasy Sports
- Golf Board
- Soccer Board
- O-T Lounge
- Tech Board
- Home/Garden Board
- Outdoor Board
- Health/Fitness Board
- Movie/TV Board
- Book Board
- Music Board
- Political Talk
- Money Talk
- Fark Board
- Gaming Board
- Travel Board
- Food/Drink Board
- Ticket Exchange
- TD Help Board
Customize My Forums- View All Forums
- Show Left Links
- Topic Sort Options
- Trending Topics
- Recent Topics
- Active Topics
Started By
Message
re: Any special needs parents here in the OT? ADMIN NEEDED
Posted on 4/12/19 at 10:28 pm to couv1217
Posted on 4/12/19 at 10:28 pm to couv1217
Couv, I missed your email address, as I’m literally just catching a break. What I can tell you is this:
- My wife and I had absolutely no clue that our daughter was going to have Downs. We went in blind and the emotions of that day are still so vividly overwhelming: tons of tears and fears about an unknown future.
- That evening she was born, after trying to cope with everything all day long (and reading that damn “Welcome to Holland” a thousand times - I still cry when I read it, and I absolutely love the poem), cardiologist comes in and tells us she has complete AVSD. She was in heart failure within three months, and we were in Boston having her opened up.
- We did a feeding tube for her first year of life. First three months, poor things heart was working so hard to try to get oxygenated blood out to her body (it wasn’t doing a very good job), that she slept all day, everyday. Once the surgery was done, she had lost the sucking reflex and had to relearn it through a lot of OT and PT. Eventually she did and today she has more than a healthy appetite.
- Your little one is going to teach you more humility and patience than you could ever imagine. You’ll learn to take nothing for granted, appreciate small things others ignore, and will find more joy in life because you are the father to such an amazing child.
I have a million stories I could share, but I’m not going to overwhelm you in one post. If you have anything specific you want to know, feel free to ask.
- My wife and I had absolutely no clue that our daughter was going to have Downs. We went in blind and the emotions of that day are still so vividly overwhelming: tons of tears and fears about an unknown future.
- That evening she was born, after trying to cope with everything all day long (and reading that damn “Welcome to Holland” a thousand times - I still cry when I read it, and I absolutely love the poem), cardiologist comes in and tells us she has complete AVSD. She was in heart failure within three months, and we were in Boston having her opened up.
- We did a feeding tube for her first year of life. First three months, poor things heart was working so hard to try to get oxygenated blood out to her body (it wasn’t doing a very good job), that she slept all day, everyday. Once the surgery was done, she had lost the sucking reflex and had to relearn it through a lot of OT and PT. Eventually she did and today she has more than a healthy appetite.
- Your little one is going to teach you more humility and patience than you could ever imagine. You’ll learn to take nothing for granted, appreciate small things others ignore, and will find more joy in life because you are the father to such an amazing child.
I have a million stories I could share, but I’m not going to overwhelm you in one post. If you have anything specific you want to know, feel free to ask.
0
Posted on 4/12/19 at 10:39 pm to couv1217
Just love her. Everything else will fall in place.
Posted on 4/12/19 at 10:56 pm to couv1217
Couv, I have a son with Down syndrome. I never post but felt compelled to do so tonight. We live in BR and are pretty active in the DS community. Fact is, I wouldn’t change anything at all. My son has given my family and I way more than we can ever give in return. We are the lucky few, my friend. Please email me. christopherHdoyle13@gmail.com (please notice the H)
Posted on 4/12/19 at 11:02 pm to couv1217
Ours didnt start walking for a while. She never crawled, either. She did this kind of skootching around on her butt. I think it was closer to two years when she started walking.
We went to the special olympics event a couple of weeks ago. I told my wife that I wish I could be as happy as these kids are
We went to the special olympics event a couple of weeks ago. I told my wife that I wish I could be as happy as these kids are
Posted on 4/12/19 at 11:22 pm to blight
can relate to the thread.
damn I love the OT
damn I love the OT
Posted on 6/18/20 at 12:03 pm to Fusaichi Pegasus
Things are been rocky for the poor little one which are requiring numerous surgeries. As a family since the wife isn’t working because she has to stay at home with the LO, times have gotten hard. A friend started a go fund me for my daughter which my wife and I deliberated numerous nights on. Before I post it here and get anchored I wanted check with an admin.
Posted on 6/18/20 at 12:21 pm to couv1217
It’s for your baby girl, I’d say post it & if the admins don’t like it they can PM you
Posted on 6/18/20 at 12:23 pm to couv1217
Just want to say you should be proud of yourself. You seem like a kickass dad and person. Cheers.
Posted on 6/18/20 at 12:26 pm to couv1217
I can't imagine having to go through something like that as a parent. My son has to have speech therapy due to him not being able to make certain letter sounds and I've worried myself sick about his future sometimes. And that doesn't even come close to comparing to what your family is going through.
Just wanted to say hang in there and you seem like a great parent. I know it has to be tough and if you do get to post the GoFundMe I'll do what I can to help out. and keep plugging away.
Just wanted to say hang in there and you seem like a great parent. I know it has to be tough and if you do get to post the GoFundMe I'll do what I can to help out.
and keep plugging away. This post was edited on 6/18/20 at 12:28 pm
Posted on 6/18/20 at 12:31 pm to couv1217
Reach out to Families Helping Families of greater Baton Rouge. They are a great resource for programs and support groups and such for people with disabilities
Posted on 6/18/20 at 12:31 pm to couv1217
quote:
Things are been rocky for the poor little one which are requiring numerous surgeries. As a family since the wife isn’t working because she has to stay at home with the LO, times have gotten hard. A friend started a go fund me for my daughter which my wife and I deliberated numerous nights on. Before I post it here and get anchored I wanted check with an admin.
Sorry to hear this. What sort of surgeries? There are different resources depending on what sort of assistance you may need. For example, there are family grants through the Louisiana Pediatric Cardiology Foundation if your LO is having heart type surgeries. LINK
This post was edited on 6/18/20 at 12:35 pm
Posted on 6/18/20 at 12:36 pm to couv1217
It's going to be difficult but you can do it. There's a few parenting groups in BR. Check with the Jones Creek Library as it used to host them a lot and maybe they'll have contact info.
Posted on 6/18/20 at 12:36 pm to couv1217
I don't have any special needs kids. Nor have I had much hands on experience. I just wanted to come and say this...
I have volunteered at the Special Olympics many times, and it's one of the most special times in my life. I wish people in this world can love and enjoy life like those athletes do. They celebrate success of themselves and others around them without judgement and with pure love.
I hope you can post your gofundme. And I know things won't always be easy for you two as parents. Things won't be easy for your child either. Just remember that love and compassion is universal. Give all of it you can, and I promise you will get so much more back than you can imagine.
I have volunteered at the Special Olympics many times, and it's one of the most special times in my life. I wish people in this world can love and enjoy life like those athletes do. They celebrate success of themselves and others around them without judgement and with pure love.
I hope you can post your gofundme. And I know things won't always be easy for you two as parents. Things won't be easy for your child either. Just remember that love and compassion is universal. Give all of it you can, and I promise you will get so much more back than you can imagine.
Posted on 6/18/20 at 12:40 pm to couv1217
My brother has downs and I LOVE HIM So much ! Little brother is now 56. I know back when Robert was born they told my parents he needed to be institutionalized ! They sent him to Hammond St school when he was like 6 months old! We would go see him on weekends and I would cry every time we left. Thank God a social worker realize this and started group homes. My brother is nothing but Love. No money worries, things going on now , nothing but Love. Everything will be alright! Thank God people are more understanding now and if I had the money my bro would live with me. He's in Hammond great place him & a friend live in 2 bedroom house. God's special ?? children !
Posted on 6/18/20 at 1:07 pm to couv1217
quote:Post it. Admins will fix it if necessary. You have to try.
Before I post it here and get anchored I wanted check with an admin.
Posted on 6/18/20 at 1:10 pm to couv1217
Not a parent, but I work in special needs. Search on facebook for special needs parent groups specific to your area....There is one for here in Shreveport. Also, look up families helping families. In addition to advocating for your daughter when the time comes, they host parent support groups. Best of luck and God bless you and your beautiful daughter on the journey.
Posted on 6/18/20 at 1:19 pm to couv1217
My son has autism. At first I was in denial. My wife knew all along. When we had the official diagnosis I was angry. Now I feel we are blessed to have such a special boy. We need people in this world like my son.
He sees things differently than a neuro-typical child does. He's very intelligent and has unbelievable memory. He's currently 7 and has a fascination with road signs and google maps. He draws street grids from memory and can name all the streets on hwy 59 from here to Mandeville.
It was hard at first, but now not so much. There are times when certain sounds (sensory issues), movies, etc., really get to him and we'll have to turn it off, which is kind of unfair to my 2 year old. But they have such a good relationship. We've had him in ABA, speech and OT for many years which have really helped.
Best wishes and blessings to you and your family! Just know you are not alone.
He sees things differently than a neuro-typical child does. He's very intelligent and has unbelievable memory. He's currently 7 and has a fascination with road signs and google maps. He draws street grids from memory and can name all the streets on hwy 59 from here to Mandeville.
It was hard at first, but now not so much. There are times when certain sounds (sensory issues), movies, etc., really get to him and we'll have to turn it off, which is kind of unfair to my 2 year old. But they have such a good relationship. We've had him in ABA, speech and OT for many years which have really helped.
Best wishes and blessings to you and your family! Just know you are not alone.
Posted on 6/18/20 at 3:55 pm to Friedbrie
All of your posts have always been amazing on our situation since the day I first posted. I can’t even begin to tell you how much it means to me. When I get upset I always come read all of your positive thoughts. Again, I can’t thank you all enough. Sorry admins but I’m gonna let it fly. I apologize in advance if not approved.
My Macy Bug
My Macy Bug
Posted on 6/18/20 at 3:58 pm to Lsupimp
quote:
A very moving post that leads me to believe that she landed with the right parents. She will be THE blessing of your life- no doubt.
Can’t top this response. Ditto!
Posted on 6/18/20 at 4:11 pm to couv1217
I admire your strength and upbeat attitude. Your daughter is a lucky girl to have you as her dad. Best wishes to her for a long, healthy life!
Page 4 of 8
Popular
Back to top
Follow TigerDroppings for LSU Football News