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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
65
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 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 10:09 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 10:18 am to couv1217
I do hope this comes across as tender and mindful.
You are doing most well by educating yourself for the possibilities ahead, no question. You noted that her condition was unknown until birth which can mean the infant you expected and had hopes for has altered. Dealing with that may need to be addressed as you are in unchartered waters. At some level you experienced a loss and how we let go sets the stage for how we receive.
I could be totally wrong and I share this with the most tenderness I can muster on a message board.
You are doing most well by educating yourself for the possibilities ahead, no question. You noted that her condition was unknown until birth which can mean the infant you expected and had hopes for has altered. Dealing with that may need to be addressed as you are in unchartered waters. At some level you experienced a loss and how we let go sets the stage for how we receive.
I could be totally wrong and I share this with the most tenderness I can muster on a message board.
Posted on 4/12/19 at 10:20 am to couv1217
Best of luck, I’m sure it may be tough. Children are a blessing
This post was edited on 4/12/19 at 10:20 am
Posted on 4/12/19 at 10:24 am to couv1217
I’ve got a Special Needs stepchild but it’s a very different situation than yours.
She’s somewhat high functioning and it wasn’t diagnosed until she was nearly in her teens. She is missing part of a chromosome and that issue (deletion syndrome) is still pretty obscure.
It’s frustrating at times because we’re having trouble differentiating between what is an issue due to genetics and what is an issue due to either maturity or attitude.
Much like Downs, there is a laundry list of potential issues that go along with this and we’ve had to get her tested for a number of them to rule them out.
Ex - She has severe ADHD, which is highly correlated to this condition, but she doesn’t have seizures, heart problems, or a number of other issues which have a correlation.
We love her but we’re also looking down the barrel of her completing school in a few years and trying to figure out if she will continue on in school, start working, what she will do for a career. It’s scary as hell because she is capable of anything but isn’t necessarily able to stay on task and I certainly don’t see her living on her own.
She’s somewhat high functioning and it wasn’t diagnosed until she was nearly in her teens. She is missing part of a chromosome and that issue (deletion syndrome) is still pretty obscure.
It’s frustrating at times because we’re having trouble differentiating between what is an issue due to genetics and what is an issue due to either maturity or attitude.
Much like Downs, there is a laundry list of potential issues that go along with this and we’ve had to get her tested for a number of them to rule them out.
Ex - She has severe ADHD, which is highly correlated to this condition, but she doesn’t have seizures, heart problems, or a number of other issues which have a correlation.
We love her but we’re also looking down the barrel of her completing school in a few years and trying to figure out if she will continue on in school, start working, what she will do for a career. It’s scary as hell because she is capable of anything but isn’t necessarily able to stay on task and I certainly don’t see her living on her own.
Posted on 4/12/19 at 10:24 am to couv1217
I do not have a child with special needs. But children with DS are a blessing. And im sure this child is about to make you open your eyes to things you never seen before. They are the most loving, and caring people in the world.
Posted on 4/12/19 at 10:32 am to couv1217
Our SN son just turned 27. It sounds like you have the love, patience, and caring all lined up so I'd advise you to not neglect the financial aspect. I feel better knowing we have saved and planned for what happens to him after we are gone. Also, make sure to plan respite for yourself and your wife from time to time, it helps recharge you.
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