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Any special needs parents here in the OT? ADMIN NEEDED
Posted on 4/12/19 at 9:42 am
Posted on 4/12/19 at 9:42 am
Our newest little edition came in early March. Unbeknownst to us until she came out, she came with an extra chromosome. So far she’s done really well at proving the stereotypes wrong of children with Down Syndrome. Zero heart defects. More than 50% of DS are born with some type of heart defect and need multiple heart surgeries. She’ll need none. She has always ate well. 2 days into the nicu they pulled her off of feeding tubes and let her eat straight from a bottle on her own. Most DS babies are in the nicu for a while because they don’t have the muscle strength to suck on a nipple from a bottle. Most recently she had her first evaluation and she began lifting her head and trying to roll in front of the evaluator. Again, most DS babies have low muscle tone so the evaluator was very shocked at what she was able to do. We will get the results of the full evaluation next week from our case worker.
I guess I’m wondering if there are any parents, dads in particular, that have kids with special needs and how did you handle it. I THINK I’m handling it well. Immediately started reading, bought books, and dvds. I had one initial breakdown in the hospital but that was it. Idk if I’ve fully coped with the situation or still in denial somewhat. Idk. Just looking to hear from other people who have faced something like this.
I guess I’m wondering if there are any parents, dads in particular, that have kids with special needs and how did you handle it. I THINK I’m handling it well. Immediately started reading, bought books, and dvds. I had one initial breakdown in the hospital but that was it. Idk if I’ve fully coped with the situation or still in denial somewhat. Idk. Just looking to hear from other people who have faced something like this.
This post was edited on 6/18/20 at 12:04 pm
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Posted on 4/12/19 at 9:45 am to couv1217
Best wishes to y’all and the little one. Good to hear she has done well.
Posted on 4/12/19 at 9:46 am to couv1217
It sounds like you are handling it very well.
Posted on 4/12/19 at 9:47 am to couv1217
My sister has severe autism and is very low functioning, and the way I describe it is that that child is yours for a reason. I thank God my sister grew up with great parents. Having a family member with autism is something I would never wish on someone, but I can’t imagine our family’s life without it. It’s a huge part of our lives, obviously. There are also state benefits and such you could look into for people with special needs. I’ll try and respond to questions you have and can run some by my folks.
Posted on 4/12/19 at 9:47 am to couv1217
People with Downs are some of the most beautiful people in the world. Best of luck to you and your family begins this journey.
Posted on 4/12/19 at 9:49 am to couv1217
(no message)
This post was edited on 4/12/19 at 9:59 am
Posted on 4/12/19 at 9:50 am to couv1217
It's got to be overwhelming but healthy ds kids can really thrive in this world. Get in touch with some support groups and they'll help you handle it. I've honestly heard that most people in your situation look back on their experiences as a true miracle. God bless you and your family and congrats on a beautiful baby. You got this.
Posted on 4/12/19 at 9:51 am to OldHickory
Best of luck to you and your family. DS is very much a spectrum, like Autism. You have some that are extremely intelligent and even excel in school and who have very little physical limitations and then you have those who have many serious mental and health related issues. It SOUNDS like you may be on the better end of the spectrum and not have so many problems. I hope that is the case. I wish I had more to offer but it sounds like you are handling this as well as you could expect and you are educating yourself. Keep it up!
Posted on 4/12/19 at 9:51 am to couv1217
I do not have special needs kids, but I am a behavior analyst who works with special needs kids (primarily Autism). First, I would say find a support group. If you search facebook, there are usually ones specific to your area. This can be huge as it's a community of people who have gone through what you are going through and more important can understand what you are going through better than those in your life without a special needs kiddo.
One thing to prepare for is your milestones and normal will be different from all the people around you. I think this is what I see my parents struggle with the most. Everyone around them is celebrating thier kid making the honor roll, or making the team etc.... they are celebrating things like finally being potty trained, or being able to communicate something new at age 10. Again, having a group of people who are going though that around you will be huge!!
I have worked and spent a lot of time with people with down syndrome in a variety of settings and can say that while they have and provide a number of challenges, they are truly some of the happiest people I have ever met. They have a joy about them and an enthusiasm for each day that I honestly envy. Soak that in!! You're kiddo is and is going to be amazing!!
One thing to prepare for is your milestones and normal will be different from all the people around you. I think this is what I see my parents struggle with the most. Everyone around them is celebrating thier kid making the honor roll, or making the team etc.... they are celebrating things like finally being potty trained, or being able to communicate something new at age 10. Again, having a group of people who are going though that around you will be huge!!
I have worked and spent a lot of time with people with down syndrome in a variety of settings and can say that while they have and provide a number of challenges, they are truly some of the happiest people I have ever met. They have a joy about them and an enthusiasm for each day that I honestly envy. Soak that in!! You're kiddo is and is going to be amazing!!
Posted on 4/12/19 at 9:55 am to couv1217
That's honestly one of my biggest fears of having kids but it's something you have to get over if you want them eventually I imagine.
One of my close buddies has a daughter with a microdeletion of the 13th chromosome. It's virtually similar to Down Syndrome. They develop to a certain level and don't progress mentally past that stage. She has the added complication that she will never speak as a part of her condition. She can make noises, but cannot form words or sentences. She is 3 or 4 now.
Whatever you do, despite what "normal" is for their condition, continue to press through those. For example, my buddy's daughter will likely never speak fluently, but they continue to press her and encourage her to try to speak. They're working on potty training right now even though her brain doesn't exactly acknowledge that the sensation of needing to go, means go to the bathroom.
You'll never know their capability or potential if you give up on them.
One of my close buddies has a daughter with a microdeletion of the 13th chromosome. It's virtually similar to Down Syndrome. They develop to a certain level and don't progress mentally past that stage. She has the added complication that she will never speak as a part of her condition. She can make noises, but cannot form words or sentences. She is 3 or 4 now.
Whatever you do, despite what "normal" is for their condition, continue to press through those. For example, my buddy's daughter will likely never speak fluently, but they continue to press her and encourage her to try to speak. They're working on potty training right now even though her brain doesn't exactly acknowledge that the sensation of needing to go, means go to the bathroom.
You'll never know their capability or potential if you give up on them.
Posted on 4/12/19 at 9:58 am to couv1217
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.
Posted on 4/12/19 at 9:58 am to couv1217
(no message)
This post was edited on 4/20/19 at 7:26 am
Posted on 4/12/19 at 9:59 am to couv1217
quote:
Unbeknownst to us until she came out, she came with an extra chromosome
Don't take this the wrong way, but I thought this was something that was always known beforehand
Posted on 4/12/19 at 10:02 am to couv1217
Great post, sounds like you're handling it very well. You and your SO got this. Congrats on the new addition to the family and best wishes going forward!
Posted on 4/12/19 at 10:07 am to Ed Osteen
My recollection is that the standard set of tests run do not include that. There is a second set of tests that is not covered by insurance to determine chromosomal markers.
Posted on 4/12/19 at 10:09 am to couv1217
Sounds to me that your daughter is going to be living with wonderful caring parents.
Congrats man!
Congrats man!
Posted on 4/12/19 at 10:13 am to Ed Osteen
quote:
Don't take this the wrong way, but I thought this was something that was always known beforehand
I'm not going to answer the question, because I'm not 100% and don't want to be wrong. However, there is a lot of testing done. My wife is pregnant and the first appointment we had was with a genetic specialist. It's done by a few different things and uses an algorithm. This was done by a family history, blood tests, and ultrasounds.
Our chances was very very low, but it can always be wrong. Just like some of these tests can be positive and be wrong. We have two healthy kids already, so there shouldn't be issues.
I give respect to OP because there are a lot of families out there that don't take care of these kids properly and dump them in homes. Wife used to work in group homes years ago, and it's so sad to see family members never coming to see them. We used to take a few of her residents out to eat on the weekends to get them out and about.
Posted on 4/12/19 at 10:13 am to Tbonepatron
quote:Well our first born had what was called a "shadow" in his heart, that was a marker for DS during our first ultrasound visit. That prompted a visit to a specialist who basically did another ultrasound and looked for visual clues (clenched fists, certain arm movements, etc.) and determined that our son did not have DS.
My recollection is that the standard set of tests run do not include that. There is a second set of tests that is not covered by insurance to determine chromosomal markers.
I'm pretty sure that was all covered through insurance
Posted on 4/12/19 at 10:16 am to Tbonepatron
yeah, there is a test they can do on amniotic fluid. been there.
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