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re: Any special needs parents here in the OT? ADMIN NEEDED
Posted on 4/12/19 at 10:18 am to couv1217
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.
0
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 10:28 am to oleyeller
Yes, 13 years ago
Ours had to have heart surgery and will need another one.
Cried day she was born, haven't cried since then.
The joys will far outweigh anything else you deal with.
At first, had no idea if I could raise this child, but it's worked so far!
Ours had to have heart surgery and will need another one.
Cried day she was born, haven't cried since then.
The joys will far outweigh anything else you deal with.
At first, had no idea if I could raise this child, but it's worked so far!
This post was edited on 4/12/19 at 10:30 am
Posted on 4/12/19 at 10:30 am to Ed Osteen
quote:
Don't take this the wrong way, but I thought this was something that was always known beforehand
Nope. Not unless you elect for the extra testing...
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.
Posted on 4/12/19 at 11:08 am to couv1217
My initial feeling was feeling sorry for you but so so many people have said that having a child with DS is a blessing like no other. They are just full of love and happiness. They teach us life lessons rather than us teaching them.
Posted on 4/12/19 at 11:09 am to couv1217
My oldest son has what appears to be cerebral palsy and has pretty severe communication and muscular difficulties.
First things first. You should look into Early Steps, Early Steps, which will hook you up with extra services and get you oriented as to what special services may be needed in early development. The counselors generally know what they are doing.
Someone mentioned Families Helping Families of Greater Baton Rouge. That's a good organization which provides helpful assistance, and when your child enters school, may be able to assist in the IEP process until you get a handle on it.
Also, with a child with Downs, you have more educational opportunities than you would with a different developmental issue, such as CP. There are Catholic schools which have very good programs for children with Downs, if private school interests you. I can't say which schools in Baton Rouge have good programs, but Cathedral Carmel and St. Thomas Moore in Lafayette has excellent programs.
The most important thing is taking care of your relationship. The divorce rate in the special needs community is higher than the average because of the stress and issues. It's best to know that now and work to keep it together, because trust me when I say everyone will need everyone to do their part.
We all muddle through, and you will too.
First things first. You should look into Early Steps, Early Steps, which will hook you up with extra services and get you oriented as to what special services may be needed in early development. The counselors generally know what they are doing.
Someone mentioned Families Helping Families of Greater Baton Rouge. That's a good organization which provides helpful assistance, and when your child enters school, may be able to assist in the IEP process until you get a handle on it.
Also, with a child with Downs, you have more educational opportunities than you would with a different developmental issue, such as CP. There are Catholic schools which have very good programs for children with Downs, if private school interests you. I can't say which schools in Baton Rouge have good programs, but Cathedral Carmel and St. Thomas Moore in Lafayette has excellent programs.
The most important thing is taking care of your relationship. The divorce rate in the special needs community is higher than the average because of the stress and issues. It's best to know that now and work to keep it together, because trust me when I say everyone will need everyone to do their part.
We all muddle through, and you will too.
Posted on 4/12/19 at 11:28 am to TBoy
I’m sorry to hear that TBoy. I know that must be extremely challenging for you and your wife.
This post was edited on 4/12/19 at 11:29 am
Posted on 4/12/19 at 11:44 am to Brazos
quote:
I’m sorry to hear that TBoy. I know that must be extremely challenging for you and your wife.
Thanks. It's not that hard in that you just establish different routines. For example, I get my son up and on the bus every morning and my wife sleeps a little longer. She keeps his medical and therapy schedule. We have help in the afternoons and on Saturday.
I's be lying if I didn't admit that it's hard financially. We average about $23,000 a year in unreimbursed and uninsured medical and extra care expenses, so saving is difficult. But we are happy and my son is happy. We know other special needs parents who have it much harder.
Posted on 4/12/19 at 12:22 pm to TBoy
Wow that is quite an expense but if y’all are happy then that’s all that matters.
Posted on 4/12/19 at 12:34 pm to Brazos
quote:
Wow that is quite an expense but if y’all are happy then that’s all that matters.
You don't really have a choice. Insurance won't cover a secondary wheelchair or a special light transport chair, or an off road wheelchair. Insurance won't cover an adaptive bicycle or an adaptive swing for the backyard, or special chairs to sit in in the house which aren't wheelchairs. Insurance only covers so many physical therapy visits, then it becomes private pay. Same for speech therapy and OT. But you can't do therapy for three months out of the year. Also, copays apply to every covered session as well. I could go on about the special place in hell reserved for Blue Cross.
The waiting list for waiver coverage under Medicaid, which provides a secondary payer, was nine and a half years for us. All appointments beyond Blue Cross were full price private pay. Throughout that time all in-home help was private pay. Anyone who has had an elderly family member with in-home care knows what I'm talking about. Now that we get hours under the waiver program, only excess hours are private pay.
It all adds up. The economics are terrible. That's probably why the divorce rate is so high. You just have to adjust.
Fortunately the OP won't have many of these expenses. And despite the commitment, it all works out.
This post was edited on 4/12/19 at 12:36 pm
Posted on 4/12/19 at 12:36 pm to TBoy
You can also apply for social security for special needs children. It's not a lot.but, it helps. Around $750 a month.
This post was edited on 4/12/19 at 12:37 pm
Posted on 4/12/19 at 12:44 pm to MorbidTheClown
quote:
You can also apply for social security for special needs children. It's not a lot.but, it helps. Around $750 a month.
Good point and may be helpful to the OP. We don't qualify because of our household income is too high. But for the OP, this could be extremely helpful if they qualify.
Posted on 4/12/19 at 12:47 pm to TBoy
That most certainly is why the divorce rate is so high but yet it makes absolutely no sense. Divorce only adds to the economic strain on top of all the emotional pain and the innocent child involved.
Posted on 4/12/19 at 12:51 pm to Brazos
I had a downs baby smile at me, his Dad was holding him and didn’t even notice. I was behind the Dad. Baby looked at me with such joy I almost burst into tears. I felt like God was smiling at me. I am not prone to be a sentimental person. God Bless y’all.
Posted on 4/12/19 at 12:56 pm to zeebo
We have a neighborhood family with a DS child. A very happy child, always hugging people when he was younger....3-4 yrs old.
He can communicate by sign language. Nowadays, he gets on the school bus, goes to school, comes home, rides his bike....pretty much what every other 7-8 yr old does.
I have NEVER seen him unhappy, and I'm pretty sure he has blessed all of us that know him in the neighborhood!!!
He can communicate by sign language. Nowadays, he gets on the school bus, goes to school, comes home, rides his bike....pretty much what every other 7-8 yr old does.
I have NEVER seen him unhappy, and I'm pretty sure he has blessed all of us that know him in the neighborhood!!!
Posted on 4/12/19 at 2:34 pm to MrSmith65
Responding to some of the things. There is an optional test you can have done that tells you the odds/percentage of having a child with DS. SO and I knew it matter either way for so we never bothered with the test for either of our kids.
We truly had no idea and probably mainly bc my MJ doesn’t have any heart issues. My SO has hyperemisis. She basically vomited around the clock for 9 months. We were admitted into the hospital on 8 different occasions for her to get an iv if fluids. Each time she averaged about 6-8 bags and obviously while she was there both her and baby were heart monitors. No abnormalities of the heart and she grew decently enough considering what my SO was going through that there wasn’t much concern with her size. That’s 2 of the main pre-determining factors outside of the test.
Financially, yes from everything I’ve read, is very important. So we are scheduling something soon to set something for her. We are going to a DS conference this weekend in New Orleans. Hoping to learn some great things and meet some great people.
Both of our families and friends have been amazing. The support we have astonished us daily. Friends and family wanting our books when we are done to read. Offering help and meals. We are truly blessed and we only want to bless her and her sister with as much.
I’m a super planner so thinking about her future seems to all I think about. I’m having a hard time enjoying the moment thinking about her life later. Will she get the same chances our first daughter will? Will my wife get to go prom dress shopping? Wedding dress shopping? Will I get to walk her down the aisle? Will she able to hold a job? Will she be able to live on her own? Will she be able to drive? So much stuff I think about that is so far down the road.
Currently in education so I have a little experience with DS children and IEP’s. But that’s another thing. I was looking into making a switch with a company and getting into project controls with them. If offered we would more than likely have to move away from our circle. Is it better for me to get out of education, make more money so that we can assure our girls are taken care of, but have to leave our circle, move, and be around less or is it better for me to stay in education where I can watch over them more, stay with the circle and not move, but make much less money?
We truly had no idea and probably mainly bc my MJ doesn’t have any heart issues. My SO has hyperemisis. She basically vomited around the clock for 9 months. We were admitted into the hospital on 8 different occasions for her to get an iv if fluids. Each time she averaged about 6-8 bags and obviously while she was there both her and baby were heart monitors. No abnormalities of the heart and she grew decently enough considering what my SO was going through that there wasn’t much concern with her size. That’s 2 of the main pre-determining factors outside of the test.
Financially, yes from everything I’ve read, is very important. So we are scheduling something soon to set something for her. We are going to a DS conference this weekend in New Orleans. Hoping to learn some great things and meet some great people.
Both of our families and friends have been amazing. The support we have astonished us daily. Friends and family wanting our books when we are done to read. Offering help and meals. We are truly blessed and we only want to bless her and her sister with as much.
I’m a super planner so thinking about her future seems to all I think about. I’m having a hard time enjoying the moment thinking about her life later. Will she get the same chances our first daughter will? Will my wife get to go prom dress shopping? Wedding dress shopping? Will I get to walk her down the aisle? Will she able to hold a job? Will she be able to live on her own? Will she be able to drive? So much stuff I think about that is so far down the road.
Currently in education so I have a little experience with DS children and IEP’s. But that’s another thing. I was looking into making a switch with a company and getting into project controls with them. If offered we would more than likely have to move away from our circle. Is it better for me to get out of education, make more money so that we can assure our girls are taken care of, but have to leave our circle, move, and be around less or is it better for me to stay in education where I can watch over them more, stay with the circle and not move, but make much less money?
Posted on 4/12/19 at 2:39 pm to Lando789
Lando, that would be awesome! Same name@gmail.com
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