Author Topic: Parents of special needs children?  (Read 2176 times)

Teachstache

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Parents of special needs children?
« on: January 16, 2019, 04:52:28 AM »
Hi forum members, is there an existing thread for parents of special needs children?

davisgang90

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Re: Parents of special needs children?
« Reply #1 on: January 16, 2019, 05:05:05 AM »
Not sure.  We've got a special needs adult (20 almost 21) about to age out of the school system.  Happy to be part of a conversation!

meerkat

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Re: Parents of special needs children?
« Reply #2 on: January 16, 2019, 08:38:20 AM »
I don't think there's an existing thread but I'd be happy to be part of a conversation too. I have a preschooler and it's certainly something we keep in mind with our overall financial picture because it's impossible to know what his needs and our needs will be in ten or fifteen years. We can guess, but it really is just a guess.

CindyBS

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Re: Parents of special needs children?
« Reply #3 on: January 16, 2019, 09:15:25 AM »
I'm in.  I have a teen with 4 disabilities. 

Mississippi Mudstache

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Re: Parents of special needs children?
« Reply #4 on: January 16, 2019, 10:49:30 AM »
We have a kindergartener with spina bifida. Happy to be in the discussion.

Teachstache

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Re: Parents of special needs children?
« Reply #5 on: January 16, 2019, 05:45:28 PM »
Thanks, all. We have an almost 4 year old who has autism. Just wanted to get everyone's perspective on their own kids' needs related to mustachianism. We can't do "play with the neighborhood kids" because my kid doesn't get social cues. It's also what comes with the territory with our kid's needs. Thanks to all who want to be part of the conversation.

First questions/topic: How do you balance time for yourself with addressing your kids' unique needs in a reasonably frugal manner?

Spouse and I take turns watching our kid & making dinner while the other one exercises & watches TV while exercising.

SwordGuy

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Re: Parents of special needs children?
« Reply #6 on: January 16, 2019, 06:30:13 PM »
We have a 46 year old daughter with Downs syndrome who lives with us.

davisgang90

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Re: Parents of special needs children?
« Reply #7 on: January 17, 2019, 04:00:46 AM »
Thanks, all. We have an almost 4 year old who has autism. Just wanted to get everyone's perspective on their own kids' needs related to mustachianism. We can't do "play with the neighborhood kids" because my kid doesn't get social cues. It's also what comes with the territory with our kid's needs. Thanks to all who want to be part of the conversation.

First questions/topic: How do you balance time for yourself with addressing your kids' unique needs in a reasonably frugal manner?

Spouse and I take turns watching our kid & making dinner while the other one exercises & watches TV while exercising.
Our son with autism is almost 21, so we went through the challenges you face a while ago.  The most important thing you can do for your son is to focus on the relationship with your spouse.  Sounds like you are on a good path with time sharing chores and alone time. 

It can be very overwhelming to try to do the best for your son.  It is important to get all the services you can for early intervention.  Is your son in the school system yet for pre-K?  Have you investigated the Medicaid waiver process or SSI?  Each state usually has a nonprofit to help parents through some of those processes.  We spent time in VA and FL.  My wife actually was a counselor for the VA non profit, PEATC (http://www.peatc.org/).  They are a great resource to help you when advocating for services for your son.

As I said, our son is older, so we are a little out of the small children phase, but happy to try to answer questions.  If by chance you live in VA or northern VA specifically, I can give more options for resources.

meerkat

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Re: Parents of special needs children?
« Reply #8 on: January 17, 2019, 06:06:14 AM »
Thanks, all. We have an almost 4 year old who has autism. Just wanted to get everyone's perspective on their own kids' needs related to mustachianism. We can't do "play with the neighborhood kids" because my kid doesn't get social cues. It's also what comes with the territory with our kid's needs. Thanks to all who want to be part of the conversation.

First questions/topic: How do you balance time for yourself with addressing your kids' unique needs in a reasonably frugal manner?

Spouse and I take turns watching our kid & making dinner while the other one exercises & watches TV while exercising.

Um, as far as balancing time for myself I'm not great at it. I try to work out on my lunch break. My husband has a weekly gaming group. I was trying to have a twice a month meet up with other moms but I felt like I was putting in all the effort for a lukewarm response. We've never had luck with one person watching the kid and making dinner at the same time but our house's layout isn't conducive to that either.

Venting here cause this group will understand the whole other level of annoyance in dealing with medical bs (at least the Americans will) - my son is on medicaid insurance, of which there are four different providers but really only two in our area. Apparently the large hospital group in our area which is where all the specialists work decided that effective January 1st they don't want to take Insurance A, which we're on, and will only take Insurance B now. I only found out because another parent told me via Facebook. Kiddo has a tongue tie procedure coming up which may or may not help his speech delay. It took 6+ months to see the specialist in the first place, then after ten minutes in the room and advising that the procedure may or may not help we were able to book the appointment to have it actually done almost four months later. The appointment, of course, is in January. If it had been four weeks sooner it wouldn't have been a problem but now I've had to spend a couple hours on the phone with the doctor's office and the insurance company trying to figure out if it's still approved. Current status is that the doctor is approved but the facility is still under review. I get to call today to find out the verdict. I have also tried to start calling to enroll kiddo in the other insurance and have been routed to three different phone numbers so far, as well as one website which as very not helpful.

The only upside is that Insurance A cost half what the previous private insurance we had kiddo on had cost and seems to have much better coverage. We'll see what Insurance B is like.

snacky

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Re: Parents of special needs children?
« Reply #9 on: January 17, 2019, 07:36:38 AM »
Hello
I have an 11 year old with autism. It makes life more complicated, and sometimes a lot more expensive.  It's hard to have useful advice for others because kids and their needs are all so different.

Psychstache

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Re: Parents of special needs children?
« Reply #10 on: January 17, 2019, 07:47:30 AM »
Not a parent of a special needs child, but I am a school psychologist and have spent my entire adult life working in special ed. Would like to follow along and offer any insight I can.

Hats off to all of you. Parents of kiddos with special needs are amazing.

Bracken_Joy

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Re: Parents of special needs children?
« Reply #11 on: January 17, 2019, 07:53:55 AM »
Not a parent of a special needs child, but I am a school psychologist and have spent my entire adult life working in special ed. Would like to follow along and offer any insight I can.

Hats off to all of you. Parents of kiddos with special needs are amazing.

Similar idea here- I'm a home health pediatric nurse (I specialize in ventilator dependent kiddos, work with a variety of ages and conditions). Right now I'm off work for medical reasons. But the parents of "my kiddos" are often some of the most incredible, inspiring, strong people I've ever met. So honestly, I'm missing my families in some ways right now! I'll probably just follow/read unless anyone has any specific questions. I'm in OR, so if anyone is looking for resources here feel free to tag me or PM and I'll do my best to direct you.

StarBright

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Re: Parents of special needs children?
« Reply #12 on: January 17, 2019, 08:10:06 AM »
I'm here! We have a 2E 7 year old and no one can pin down what the "E"'s might be (but ASD is a possibility).

We are really bad at balancing time for ourselves because our kids just need so much. Our younger child is more neuro-typical, but still not.

But - I was starting to have panic attacks a year ago so I started seeing a therapist. It was one of the best things I've ever done for myself. I see her about every three weeks and just unload and she tells me I'm doing great - it is crazy to me how helpful it is.

I remember reading a while ago that mothers of ASD kids show similar brain patterns to soldiers with PTSD and it really hit home that shoring up one's own mental resources is extremely important.

You might still be in the phase of sleep problems, but our DS7 finally started sleeping through the night and going to bed at a decent time this year (with the help of supplements) and DH and I use 9-10pm for us time whenever possible. We try to play boardgames, watch tv shows, sit and read books together, etc. It helps us not get too frustrated with each other which helps us parent better.

We've also found that it is important to save as much as we can because insurance and therapies only get more expensive, but we do spend money on activities for our kids because we also have social issues and can't just play with friends. I also allow myself an occasional food delivery service when I just can't take it anymore. We save about 35-40% of our income. We used to try to aim for 50% but we were miserable and stressed all the time.
 

snacky

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Re: Parents of special needs children?
« Reply #13 on: January 17, 2019, 12:53:07 PM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

Mississippi Mudstache

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Re: Parents of special needs children?
« Reply #14 on: January 17, 2019, 02:28:07 PM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

Speaking for me personally: Our son is in a wheelchair and has no feeling below the belly button, but he is neurotypical. It's too soon to say whether he'll be able to live independently. I assume so and hope so. But for us, FIRE is maybe 10 years away, so I assume we'll know a lot more about his independence by then. But definitely we wouldn't quit working if it meant compromising his access to health care or living assistance in any way.

CindyBS

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Re: Parents of special needs children?
« Reply #15 on: January 17, 2019, 07:01:32 PM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We are fortunate that it is very likely my teen son will be an independent adult, even if he takes a little longer to launch.  BUT and this is a big but, we are setting up our plans with the assumption he could fail and be living with us forever.  He has high functioning Autism, GAD, a learning disability in writing, is high IQ/GT, has cancer and is recovering from a bone marrow transplant.  (cancer is at extremely low levels and under control, but he is not "cancer free")

examples - we are downsizing our house as a part of FIRE.  The next house will have a first floor bedroom and full bath b/c my son had a complication from treatment that affected his joints/bones and he is very likely to need a knee replacement or a wheelchair before age 40.  We can't count on him being able to be independent if that happens.  Or him being able to maintain an apartment or live alone if he relapses or gets a secondary cancer and can't work.

We want to retire in 2023(ish), but a lot of that is dependent on if the ACA is still in place and how our son's insurance will be.

With the Autism - while I know he will probably have romantic relationships and has a good chance of getting married someday, we can't count on him every having a spouse or child of his own that will take care of him in the future. 

But the main way our long term planning is affected is that I have a very spotty work history of part time jobs and never worked full time after I had kids more than 10 years ago.  Mostly b/c we chose for me to be around to do all the medical appointments, after school therapies, home on the school breaks, working with our son on skills during the summers, etc.  I have not worked at all in a few years at this point.  I estimate me not working outside the home full time in my former career has delayed our FIRE by 10 years. 

Teachstache

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Re: Parents of special needs children?
« Reply #16 on: January 17, 2019, 07:41:11 PM »
You all are effing amazing!

I'm a middle school reading teacher & I love what I do. I have to work, for my own sanity. Yes, I do behavioral training 24/7 with my teenagers at school (whom I absolutely love) and with my own kid at home. I have a doctorate in my field but I chose to stay in the K-12 classroom due to work/life balance & being able to live near family to help with our son. Spouse works at a community college in IT. We both have enjoyable jobs and pretty family-friendly schedules.

Yes, we have had our son in the Early Development Network since he was 2 & in public preschool since a week after his third birthday. His teachers are my heroes.

Can you qualify for SSI or Medicaid without income limitations? We max out 2 403b accounts & 1 457 account, plus my public employee pension. Our total taxable income is roughly $40,000 annually after retirement, pre-tax savings & pre-tax deductions. I always had the (perhaps erroneous) understanding that our income was too high to qualify for SSI or Medicaid programs.

To all: have you heard the ChooseFI podcast on setting up a Special Needs trust? It was very insightful, but wow there's a lot to digest. I'd love to discuss it with those who want to know more & I'm sure there are many here who know more than I do.

I live in Lincoln, Nebraska. So far, I've resisted joining the ASD family network, mostly due to my own social insecurities. What has everyone's experiences been with joining condition-specific support groups, or family outreach groups in general?

Finally, I'll end with a few more questions for all of you:

In what ways, if any, having a special needs child affect your decision to have more children? Spouse and I are 36 (me) & 37 (him). If parenting had taught me anything, it's that so much is beyond my control. And our son's needs have genuinely affected our viewpoint on having other children. Basically, to keep our marriage functional, we need to stop with our son.

How do you deal with pitying and/or know it all comments from well-meaning but uninformed family members? I turn into an angry mama bear whenever anyone makes the comment that I'm "brave" for having a special needs child. It's just how my kid is. Yes, there was a definite mourning period when I realized that my version of parenthood wasn't going to turn out like I thought. But he's my kid, I love him & he's our little person, end of story. Take your pity & shove it, at least that's what I want to say but I don't.

davisgang90

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Re: Parents of special needs children?
« Reply #17 on: January 18, 2019, 04:00:44 AM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We've got 2 special needs trusts set up for our son.  They are both empty vessels at the moment.

We have a 3rd party special needs trust that will be filled with his portion of the inheritance from our estate.
We have a 1st party special needs trust that is for benefits he will get from the government once my wife and I pass on.  Basically, he will get a percentage of my pension for the rest of his life and it will go into this trust.  Unlike the 3rd party trust, when he passes, all the money goes back to the government.

The purpose of a special needs trust is to protect benefits such as SSI, Medicaid/Medicare etc that your child could lose if he has too many assets. The SNT keeps the money from being in his/her name.

Our son currently receives SSI and gets his healthcare through our medical insurance (Military Tricare Select).

We have some pretty specific differences associated with me being retired military, but I'm happy to answer any questions.

dcozad999

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Re: Parents of special needs children?
« Reply #18 on: January 18, 2019, 10:55:15 AM »
We were worried about ASD with my son from the time he was three. He had a lot of the signs (toe walking, eye contact, speech delay, socially awkward, etc). He started getting all kinds of services from that time and has had massive improvements in every way. After the latest IQ test, the psychologist diagnosed him with low Executive Functioning. He has low average processing speed. OTOH, his Visual Spatial and Fluid Reasoning were high average and superior.

Now as a 7 year-old 1st grader, his IEP has gone from 4 or 5 pages to only one objective.  He's doing well in school, with the only real issue being a lack of focus at times, and a he still isn't fond of transitioning from a task if he's enjoying what he's doing. There is a para in his class that helps him and another child, though I'm not really sure how much he needs them. Hopefully that won't be part of his plan next year. He also has some minor motor tics, but 99% of people don't even notice them. He's very social, but has trouble picking up on social cues, especially sarcasm. And he doesn't always no what to say in specific situations (I have always had this issue myself).

So I don't know if you'd call me a parent of a special needs child. My wife and I both still worry incessantly about him and his future, but that's because we are worriers. Deep down I know he is going to turn out just fine. I thank God that my wife (she was in school at the time but is now a Clinical Psychologist) and the local Parents As Teachers organization were able to recognize his issues. I don't know where he would be today if he hadn't started receiving services so early on.

I want to send out positive feelings and much respect to all the parents with special needs children. You are saints.




 

meerkat

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Re: Parents of special needs children?
« Reply #19 on: January 18, 2019, 12:08:54 PM »
To all: have you heard the ChooseFI podcast on setting up a Special Needs trust? It was very insightful, but wow there's a lot to digest. I'd love to discuss it with those who want to know more & I'm sure there are many here who know more than I do.

I'm listening to it now, I'm about halfway through. (Link) It's definitely something I'm going to have to listen to again in a few weeks to try to soak up all the information. I do appreciate that he said (I'm paraphrasing) "I'm not just planning to have financial support until I'm 90, I need to plan financial support until my kids are 90 and that's a whole other thing."

lindy_zag

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Re: Parents of special needs children?
« Reply #20 on: January 18, 2019, 03:57:40 PM »
Sister of a 24-year-old disabled brother here. He lives at home with our parents, who are incredible. All of you parents who are putting so much of yourself into caring for your special needs kids, especially when those kids will probably never understand the extent of what you're doing - it's incredible. I've been surprised by how many resources they've been able to find for him - it might have to do with him being an adult now, but he's able to receive social security, medicaid, employment assistance, transportation passes, and my mom was able to take a training and is now paid for a portion of the time she spends as his caregiver. They were eligible for all of this even though my dad earns a good salary (mom has worked hourly part-time roles my whole life since my brother has required so much care). Our family spent a lot of time being ashamed of his condition and ashamed of asking for help, but I know it's lessened the burden a lot once those assistance programs were put in place.

My parents are still totally healthy and active, and there's a good chance my brother will pass away in the next ten years as his condition progresses. If he outlives them, or his care just becomes too much for them as they age, I have a general assumption that he'll live with me although a care facility might be a possibility. It definitely impacts my thinking around having kids of my own - both because I want to have the capacity to be there for him and because I'm so aware that every pregnancy is a complete roll of the dice in that capacity.

Teachstache

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Re: Parents of special needs children?
« Reply #21 on: January 19, 2019, 07:24:22 AM »
We were worried about ASD with my son from the time he was three. He had a lot of the signs (toe walking, eye contact, speech delay, socially awkward, etc). He started getting all kinds of services from that time and has had massive improvements in every way. After the latest IQ test, the psychologist diagnosed him with low Executive Functioning. He has low average processing speed. OTOH, his Visual Spatial and Fluid Reasoning were high average and superior.

Now as a 7 year-old 1st grader, his IEP has gone from 4 or 5 pages to only one objective.  He's doing well in school, with the only real issue being a lack of focus at times, and a he still isn't fond of transitioning from a task if he's enjoying what he's doing. There is a para in his class that helps him and another child, though I'm not really sure how much he needs them. Hopefully that won't be part of his plan next year. He also has some minor motor tics, but 99% of people don't even notice them. He's very social, but has trouble picking up on social cues, especially sarcasm. And he doesn't always no what to say in specific situations (I have always had this issue myself).

So I don't know if you'd call me a parent of a special needs child. My wife and I both still worry incessantly about him and his future, but that's because we are worriers. Deep down I know he is going to turn out just fine. I thank God that my wife (she was in school at the time but is now a Clinical Psychologist) and the local Parents As Teachers organization were able to recognize his issues. I don't know where he would be today if he hadn't started receiving services so early on.

I want to send out positive feelings and much respect to all the parents with special needs children. You are saints.

This sounds similar to our son when he was 3 & received his ASD diagnosis. I pushed for testing even when his pediatrician balked at my suggestion & was then "shocked" after the diagnosis & said she didn't know where it came from. Um...no eye contact, twirling objects, spinning in circles repeatedly, speech delay, extreme focus on particular objects. Because our pediatrician missed the signs, even when I clearly laid them out for her, & then she recommended intensive speech therapy after he had begun making progress through public preschool services, I'm much less trusting of the medical community.

 I probably shouldn't be so skeptical, but as an educator who has conducted research into appropriate school settings for children with delayed literacy skills, I'm finding a lot more support and assistance with his public school teachers. The medical community hasn't given us the 'parent as coach" support that we need. I want to learn how to implement changes & help my child progress at home, not just rely on medical providers to do that work. So, perhaps I've been unnecessarily resistant to my son receiving medical specialty services like speech therapy, occupational therapy & behavior therapy. His teachers are very complimentary of the progress he has made over the last year & their response when I've asked about searching for additional services has been to say that we "might find it helpful, but we're not overly concerned. His skills will come."

For anyone who has taken their child to speech and/or behavioral therapy, what was your experience like?
« Last Edit: January 19, 2019, 07:26:44 AM by Teachstache »

Teachstache

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Re: Parents of special needs children?
« Reply #22 on: January 19, 2019, 07:28:48 AM »
To all: have you heard the ChooseFI podcast on setting up a Special Needs trust? It was very insightful, but wow there's a lot to digest. I'd love to discuss it with those who want to know more & I'm sure there are many here who know more than I do.

I'm listening to it now, I'm about halfway through. (Link) It's definitely something I'm going to have to listen to again in a few weeks to try to soak up all the information. I do appreciate that he said (I'm paraphrasing) "I'm not just planning to have financial support until I'm 90, I need to plan financial support until my kids are 90 and that's a whole other thing."

Me, too. It was so helpful but also kind of overwhelming in the amount of information. I'm going to need to listen to it at least twice more to fully grasp all of the information.

Teachstache

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Re: Parents of special needs children?
« Reply #23 on: January 19, 2019, 07:31:33 AM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We've got 2 special needs trusts set up for our son.  They are both empty vessels at the moment.

We have a 3rd party special needs trust that will be filled with his portion of the inheritance from our estate.
We have a 1st party special needs trust that is for benefits he will get from the government once my wife and I pass on.  Basically, he will get a percentage of my pension for the rest of his life and it will go into this trust.  Unlike the 3rd party trust, when he passes, all the money goes back to the government.

The purpose of a special needs trust is to protect benefits such as SSI, Medicaid/Medicare etc that your child could lose if he has too many assets. The SNT keeps the money from being in his/her name.

Our son currently receives SSI and gets his healthcare through our medical insurance (Military Tricare Select).

We have some pretty specific differences associated with me being retired military, but I'm happy to answer any questions.

@davisgang90, did you apply for SSI & Medicaid for your child while you were employed? What was the deeming process like?

davisgang90

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Re: Parents of special needs children?
« Reply #24 on: January 19, 2019, 07:36:28 AM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We've got 2 special needs trusts set up for our son.  They are both empty vessels at the moment.

We have a 3rd party special needs trust that will be filled with his portion of the inheritance from our estate.
We have a 1st party special needs trust that is for benefits he will get from the government once my wife and I pass on.  Basically, he will get a percentage of my pension for the rest of his life and it will go into this trust.  Unlike the 3rd party trust, when he passes, all the money goes back to the government.

The purpose of a special needs trust is to protect benefits such as SSI, Medicaid/Medicare etc that your child could lose if he has too many assets. The SNT keeps the money from being in his/her name.

Our son currently receives SSI and gets his healthcare through our medical insurance (Military Tricare Select).

We have some pretty specific differences associated with me being retired military, but I'm happy to answer any questions.

@davisgang90, did you apply for SSI & Medicaid for your child while you were employed? What was the deeming process like?
We applied for SSI (no medicaid as of yet) once Nick reached majority.  So it wasn't based on our income at all.  If you apply while they are less than 18, it will be based on your income.  The process wasn't too difficult.  Once he was approved we went back with a "lease" so we could get him bumped up to the max amount (at the time $750). 
« Last Edit: January 19, 2019, 07:39:06 AM by davisgang90 »

Teachstache

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Re: Parents of special needs children?
« Reply #25 on: January 19, 2019, 07:45:08 AM »
@davisgang90, thanks for the information. Incidentally, it appears that our sons have the same name.

gaja

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Re: Parents of special needs children?
« Reply #26 on: January 19, 2019, 08:54:13 AM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We have one deaf kid, and one with brachial pareses. But the welfare state provides a large safety net, and they are both more or less neurotypical (got one test back when one of them was in kindergarten: "XX is within the normal range, as long as we interpret "normal" quite broadly"). So as long as we can get them well educated, they should be able to live good lives on their own. We are planning to give them a few extra legs up; maybe some savings to start their adult life, a downpayment for an appartment, or something like that, since they are both likely to have lower lifetime earnings, and might not be able to work fulltime or until they are old.

For everyday life, DH's bipolar disorder is a larger barrier to normality. But not having the option to be normal is not necessarily a bad thing. For me, it has been a great opportunity to avoid a lot of the stress of "should". A lot of other parents stress about driving their kids to after school activities. We have chosen to skip all of that, except the activities we need to keep the kids healthy (e.g. physical therapy). I don't have to feel guilty for not having a social life, and if I need a short break from work there is always some sort of doctor's appointment or therapy session to go to (I can take up to 30 days/year off work with salary for those type of things). No one can give me a bad consience for not always serving perfectly balanced meals, or having the house in perfect order. And we have an agreement with the teachers that it is ok to not always give a fuck about tests, homework, etc. So in total, my life is less stressful than many of my coworkers', since they are still trying to live up to the expectations of society.

Teachstache

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Re: Parents of special needs children?
« Reply #27 on: January 19, 2019, 09:17:59 AM »
@gaja, are you in the US? You mentioned that the welfare state has a lot of benefits & if you're in the US, I'm honestly wondering what I'm missing out on re: benefits for my son. So far, we've been eligible for public preschool through IDEA...and that's the only thing that I know of.

gaja

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Re: Parents of special needs children?
« Reply #28 on: January 19, 2019, 11:57:51 AM »
@gaja, are you in the US? You mentioned that the welfare state has a lot of benefits & if you're in the US, I'm honestly wondering what I'm missing out on re: benefits for my son. So far, we've been eligible for public preschool through IDEA...and that's the only thing that I know of.

Nope, Norway. The system is not perfect here either, but we do get a substantial amount of help and support.

Henrysmom1

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Re: Parents of special needs children?
« Reply #29 on: January 19, 2019, 09:40:56 PM »
I rarely post but as a Mom of a 17 year old Autistic son this is an area of great interest to me. My son was diagnosed very early and I took 3 years off work to care for him and all his therapies. Went back to work at a job I was overqualified for, was bored by, and probably underpaid for, but was close to his school and gave me a somewhat flexible schedule to accommodate meetings at school, doctors appointments etc. While I really wanted to retire at age 56, I hung in there until I was 58 to put away even more money.  I have a special needs trust for him (unfounded at moment) and to a great degree follow. Mustachian lifestyle in order to save every extra penny I can. His future is a big unknown, although I imagine he will work at a low paying job. I made a point of paying off our home as early as I could, because living in Southern California means he will not likely be able to afford housing costs to live independently. I would love to move but Autistic people crave sameness and consistency and moving him from the only home he’s known could be devastating to him. Our loose plan is to have him live in the house and possibly have his brother oversee his life to some degree. The hard thing is that I need to invest for his lifetime, not mine.  I realize he will live over half his life without me ( I am on older mother), so worry incessantly about him. I have another son who is neurotypical but don’t want to burden him with his brothers care. I adore my sons,  but parents of “normal” kids have no idea of what parents of special needs kiddos endure..

davisgang90

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Re: Parents of special needs children?
« Reply #30 on: January 20, 2019, 04:46:02 AM »
I rarely post but as a Mom of a 17 year old Autistic son this is an area of great interest to me. My son was diagnosed very early and I took 3 years off work to care for him and all his therapies. Went back to work at a job I was overqualified for, was bored by, and probably underpaid for, but was close to his school and gave me a somewhat flexible schedule to accommodate meetings at school, doctors appointments etc. While I really wanted to retire at age 56, I hung in there until I was 58 to put away even more money.  I have a special needs trust for him (unfounded at moment) and to a great degree follow. Mustachian lifestyle in order to save every extra penny I can. His future is a big unknown, although I imagine he will work at a low paying job. I made a point of paying off our home as early as I could, because living in Southern California means he will not likely be able to afford housing costs to live independently. I would love to move but Autistic people crave sameness and consistency and moving him from the only home he’s known could be devastating to him. Our loose plan is to have him live in the house and possibly have his brother oversee his life to some degree. The hard thing is that I need to invest for his lifetime, not mine.  I realize he will live over half his life without me ( I am on older mother), so worry incessantly about him. I have another son who is neurotypical but don’t want to burden him with his brothers care. I adore my sons,  but parents of “normal” kids have no idea of what parents of special needs kiddos endure..
I certainly feel for you.  When your son turns 18, you can work to get him on SSI.  If you draw up a simple lease for his to rent a room in your home, they will max the amount at $771.  I "charge" my son $500 a month.  I have to count that as income, but I could then put that away for his future in the SNT.  You probably know most of this, but thought I'd mention it since it is relatively fresh in my mind.  Feel free to PM me if you have questions about guardianship/SNT process etc.  I'm in VA, but imagine most of it is similar in CA.

StarBright

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Re: Parents of special needs children?
« Reply #31 on: January 20, 2019, 06:01:42 AM »

For anyone who has taken their child to speech and/or behavioral therapy, what was your experience like?

We haven't found OT or behavioral therapy to be particularly helpful, but we've always assumed it was because no one provider has ever been comfortable with a diagnosis. We've been on a waitlist for a full neuropsych eval for over a year so we are sort of cobbling together different providers opinions in lieu of that.

We've been in a pretty intense several month OT program and the OT is flumoxed that her exercises aren't helping his behaviors at all.

Despite the fact that we find them generally unhelpful, we've been trying different therapies essentially to show his school that we are very active in trying to solve his school issues. They've been very resistant to granting him an IEP so we've been told to exhaust our resources to show that we now need school resources.

Neustache

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Re: Parents of special needs children?
« Reply #32 on: January 20, 2019, 06:58:11 AM »

For anyone who has taken their child to speech and/or behavioral therapy, what was your experience like?

We haven't found OT or behavioral therapy to be particularly helpful, but we've always assumed it was because no one provider has ever been comfortable with a diagnosis. We've been on a waitlist for a full neuropsych eval for over a year so we are sort of cobbling together different providers opinions in lieu of that.

We've been in a pretty intense several month OT program and the OT is flumoxed that her exercises aren't helping his behaviors at all.

Despite the fact that we find them generally unhelpful, we've been trying different therapies essentially to show his school that we are very active in trying to solve his school issues. They've been very resistant to granting him an IEP so we've been told to exhaust our resources to show that we now need school resources.


Mostly posting to follow this conversation but I wanted to comment on this.  Just curious what the behaviors are? I'm a parent of a 2E child (anxiety and gifted). The first 3 years of school were torture for her, but then we got a 504 plan and things got magically better.  She also matured, realized I was NOT going to home school, the 504 plan was referenced whenever there were issues that it addressed, it was awesome. 

Also, I was a para last year for an elementary age student and I'm a Functional Skills teacher this year at a high school - which is why I'm posting to follow the conversation.  Transition is CONFUSING as all get out and I'm tasked with informing the parents about a process I don't understand (but I'm starting to get).  Couple this that most of my school's parents are time poor already it's just really hard for them to follow through with the process. 

Teachstache

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Re: Parents of special needs children?
« Reply #33 on: January 20, 2019, 07:04:48 AM »
I adore my sons,  but parents of “normal” kids have no idea of what parents of special needs kiddos endure..

I get it, @Henrysmom1. I don't know what our son's future looks like but we also need to plan for his life without us, too. Since he's an only child, finding a guardian could be another hurdle that we need to think about after we're gone.

Teachstache

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Re: Parents of special needs children?
« Reply #34 on: January 20, 2019, 07:10:34 AM »

For anyone who has taken their child to speech and/or behavioral therapy, what was your experience like?

We haven't found OT or behavioral therapy to be particularly helpful, but we've always assumed it was because no one provider has ever been comfortable with a diagnosis. We've been on a waitlist for a full neuropsych eval for over a year so we are sort of cobbling together different providers opinions in lieu of that.

We've been in a pretty intense several month OT program and the OT is flumoxed that her exercises aren't helping his behaviors at all.

Despite the fact that we find them generally unhelpful, we've been trying different therapies essentially to show his school that we are very active in trying to solve his school issues. They've been very resistant to granting him an IEP so we've been told to exhaust our resources to show that we now need school resources.

Have you looked into a 504 plan in lieu of an IEP? I'm sorry that you are struggling with the school system. Ours has been nothing but supportive, and essentially, if we ask for reasonable accommodations and modifications that aren't listed on his IEP, the school is more than willing to oblige. I can't say enough good things about our school district (& I also teach for the same district, so I see both the teachers' side & the parents' side). Can you approach the district office instead of the individual school coordinator? That may lead to more services.

StarBright

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Re: Parents of special needs children?
« Reply #35 on: January 20, 2019, 02:20:16 PM »
Thanks guys! We have an unofficial "basically a 504" that hasn't worked out - because they just keep kicking my son out. But we actually appealed the decision to not give our son the IEP and we think it will go through and that we are getting one in the next 30 days or so because we've got a ton of back up now from private health providers about his needs.

@Neustache  the behaviors are mostly disruption when he gets tired of/uncomfortable with whatever it is they are doing.  But he also is very physically reactive if someone gets too close or touches him if he isn't expecting it - any uncertainty or shock sends him into full flight/fight mode. We were specifically looking for the IEP so that we could say "Do not touch him" and also so that they will let him work ahead/get differentiated work. He missed the "gifted" cut off by one point, but he also basically refused to complete two sections, and the school still wasn't giving in on acceleration.  We think the biggest issue is that we are in the "Best" school district and they don't like to deal with outliers.

Genetically, anxiety is the more likely "E" it runs in my family and I have several family members with full blown OCD. But two nephews on my husband's side have also recently been diagnosed as high-functioning ASD. So we aren't ruling anything out.

ditheca

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Re: Parents of special needs children?
« Reply #36 on: January 21, 2019, 10:49:23 AM »
School is tough.  My oldest child has Ehler's Danlos and is struggling in 6th grade.  His 504 plan isn't helping very much.

The school denied his IEP application, saying that being absent from school 15% of the time makes him ineligible.  Absenteeism due to physical disability is the reason he needs services!  Doesn't make any sense to me.  I'm worried that I'll have to end up homeschooling him.

DW has her own special needs, and the constant stress of supporting the kids is very draining for her.  I've also had to limit my career options and turn down opportunities to serve in my community because family is taxing.

Believing in a (far away) end-date helps relieve some of the pressure.  I'm trying to avoid thinking about what needs my kids will have after 18...

Bittle

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Re: Parents of special needs children?
« Reply #37 on: January 24, 2019, 11:59:45 AM »
I have an 8 year old son with autism and two younger neurotypical girls. I can honestly say that my main driver for heading towards FI is to ensure my son will be ok. He is moderately functioning and even if he crosses over into high functioning territory, he will likely remain immature for his age. My biggest fears involve him being taken advantage of in this dog eat dog world we live in. Currently we reside in the Seattle area and plan to re-locate within the next few years to enable us a cheaper COL and a home that can be his forever home. Ideal is mustachian lifestyle where he can walk/bike to everything he needs. A cute neighborhood where our neighbors know us and will be eyes and ears as he ages. In a perfect world, my daughter’s will grow up and oversee his care as needed but in case that doesn’t happen, we want a paid off home and a trust in place for him. The future for him is unknown right now and we are older parents so the plan is to save, buy a home, pay it off, save and save some more. I can relate to many of the posts on here and I’m here for advise or a listen and a nod. I get it. Oh, do I get it. I’m with ya.

Teachstache

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Re: Parents of special needs children?
« Reply #38 on: January 25, 2019, 11:59:32 AM »
I am so sorry to hear that several of you are struggling with school accommodations & your kids' needs. As a teacher who often works with identified students (I teach developmental reading), I genuinely believe that it's my job to help. It sounds like many of your issues in accessing services are due to bureaucracy & district controls, not individual administrators or teachers, correct? I'd suggest looking at IDEA & seeing if your children's schools have a community liaison to answer parents' questions. I only have expertise in how my own state (Nebraska) works but IDEA is nationwide. I've attached a parent guide for anyone who is interested.

StarBright

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Re: Parents of special needs children?
« Reply #39 on: February 08, 2019, 08:34:12 AM »
Popping in to say we got our IEP! They granted it for severe anxiety and gifted. They will not be kicking kiddo out all the time (which is what he wants and has been making his behaviors worse) and instead he will be removed to the counseling room or the intervention specialist. Also, everyone will be given strict instructions not to hold him, take things from him, etc.

The best news is that we now have access to county services including summer camp for ADHD/anxiety kids! One of our biggest struggles has been finding after and summer care because kiddo just can't handle large groups and the caregivers can't handle him not handling it.  Last summer we paid over 1k a month for an outdoor montessori type program and had to drive 40 minutes each way for a 5 hour camp.

I am so hopeful for this summer!

Neustache

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Re: Parents of special needs children?
« Reply #40 on: February 08, 2019, 11:12:19 AM »
Popping in to say we got our IEP! They granted it for severe anxiety and gifted. They will not be kicking kiddo out all the time (which is what he wants and has been making his behaviors worse) and instead he will be removed to the counseling room or the intervention specialist. Also, everyone will be given strict instructions not to hold him, take things from him, etc.

The best news is that we now have access to county services including summer camp for ADHD/anxiety kids! One of our biggest struggles has been finding after and summer care because kiddo just can't handle large groups and the caregivers can't handle him not handling it.  Last summer we paid over 1k a month for an outdoor montessori type program and had to drive 40 minutes each way for a 5 hour camp.

I am so hopeful for this summer!

Woot!!  Glad for you!  Can you elaborate on how/why he qualified?  What kind of IEP goals will he have?  I'm just curious!  Glad you got that!!

Julard

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Re: Parents of special needs children?
« Reply #41 on: February 08, 2019, 03:35:01 PM »
DS 16 with ADHD, DS 14 with ASD (high functioning, but still), trauma and serious mental illness.  I'm a single parent trying to work full time. Most days I really don't want to talk about it any more. 

Teachstache

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Re: Parents of special needs children?
« Reply #42 on: February 08, 2019, 06:57:48 PM »
Popping in to say we got our IEP! They granted it for severe anxiety and gifted. They will not be kicking kiddo out all the time (which is what he wants and has been making his behaviors worse) and instead he will be removed to the counseling room or the intervention specialist. Also, everyone will be given strict instructions not to hold him, take things from him, etc.

The best news is that we now have access to county services including summer camp for ADHD/anxiety kids! One of our biggest struggles has been finding after and summer care because kiddo just can't handle large groups and the caregivers can't handle him not handling it.  Last summer we paid over 1k a month for an outdoor montessori type program and had to drive 40 minutes each way for a 5 hour camp.

I am so hopeful for this summer!

That's wonderful news! I'm so happy for you!

StarBright

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Re: Parents of special needs children?
« Reply #43 on: February 09, 2019, 09:28:14 AM »
Popping in to say we got our IEP! They granted it for severe anxiety and gifted. They will not be kicking kiddo out all the time (which is what he wants and has been making his behaviors worse) and instead he will be removed to the counseling room or the intervention specialist. Also, everyone will be given strict instructions not to hold him, take things from him, etc.

The best news is that we now have access to county services including summer camp for ADHD/anxiety kids! One of our biggest struggles has been finding after and summer care because kiddo just can't handle large groups and the caregivers can't handle him not handling it.  Last summer we paid over 1k a month for an outdoor montessori type program and had to drive 40 minutes each way for a 5 hour camp.

I am so hopeful for this summer!

Woot!!  Glad for you!  Can you elaborate on how/why he qualified?  What kind of IEP goals will he have?  I'm just curious!  Glad you got that!!

He qualified under the behavioral line item (I can't remember the exact wording) because he disrupts class. The IEP goal is "identifying appropriate strategies for his emotions to better regulate his response to adult directive to be measured by reduced referrals out of the classroom".  He gets an in school psych session once a week as well as some group intervention type stuff.

I think the psychologist at school will be really helpful because we don't see these problems at home and all of the private people we've seen have basically said "if home gets better, school will get better." I think it will be great for him to have in school support that will have direct contact with his teacher as well as with me.


fidreamer

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Re: Parents of special needs children?
« Reply #44 on: February 12, 2019, 10:29:07 AM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

We've got 2 special needs trusts set up for our son.  They are both empty vessels at the moment.

We have a 3rd party special needs trust that will be filled with his portion of the inheritance from our estate.
We have a 1st party special needs trust that is for benefits he will get from the government once my wife and I pass on.  Basically, he will get a percentage of my pension for the rest of his life and it will go into this trust.  Unlike the 3rd party trust, when he passes, all the money goes back to the government.

The purpose of a special needs trust is to protect benefits such as SSI, Medicaid/Medicare etc that your child could lose if he has too many assets. The SNT keeps the money from being in his/her name.

Our son currently receives SSI and gets his healthcare through our medical insurance (Military Tricare Select).

We have some pretty specific differences associated with me being retired military, but I'm happy to answer any questions.
Glad to see you are out there as a resource!  My husband is retired military as well and my 14 yo daughter has a chromosomal abnormality.  I believe we set up a snt when we made our will via military attorney.  But you are motivating me to get on the ball and learn more about this.  I may be contacting you in the future.  Thanks!