Author Topic: Parents of special needs children?  (Read 4827 times)

cloudsail

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Re: Parents of special needs children?
« Reply #50 on: March 12, 2019, 07:43:11 PM »
What are people doing about the long term planning? Is care for your kid part of your FIRE plan?

The way I think about it is this. If it turns out that our son can't go to college and can't keep a job to support himself, he likely won't be getting married and having children (our son's special needs are entirely speech/social skills and not cognitive). It really doesn't cost that much more to support one more person living with us. If he survives us we will most likely leave him more than enough to live on for the rest of his life. Our only goal in this case would be to teach him how to manage his money, which I'm reasonably confident he will be able to learn.

This is basically how I pitched things to my husband, who worried that our son will never be independent and thus we cannot retire anytime soon.

cloudsail

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Re: Parents of special needs children?
« Reply #51 on: March 12, 2019, 07:46:32 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.

It was really tough before we moved closer to family. Every other year or so we'll leave the kids with my parents for a week and go on a trip as a couple. And sometimes they'll do a sleepover at the grandparents and my husband and I can have a date night. Living close to family has really made life easier for us.

cloudsail

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Re: Parents of special needs children?
« Reply #52 on: March 12, 2019, 07:51:10 PM »

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

In my experience the quality of speech therapist varies greatly. And I think the best two that my son had were with the University of Washington Autism Center. I guess that was to be expected. Basically don't be hesitant about switching providers if you don't think the current one is making progress.

cloudsail

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Re: Parents of special needs children?
« Reply #53 on: March 12, 2019, 08:01:47 PM »
Many of the therapies that I feel have been incredibly effective for my son were not covered by insurance, so I am very thankful that our income and habit of living below our means has allowed us to pay for them out of pocket. This includes a $5000 5-week social skills summer camp run by UW that he attended last year and will attend again this year. We also did several rounds of Tomatis (highly recommend especially for children with speech delay) that were several thousands each time. These are all costs that I factor into our FIRE, even though I am optimistic that he will not always need them.

At one point last year I also considered private school, which would have been over $10k per year. Thankfully I managed to find a free public alternative school very near my house which has turned out to be wonderful. But this means that we may have to reconsider our plan of moving out of our current very expensive house when we hit FIRE.

StarBright

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Re: Parents of special needs children?
« Reply #54 on: March 13, 2019, 08:45:25 AM »


She did not like that answer, and then our other friend came in and gave her the same answer.  Funny thing?  Her older child is on the autism spectrum, and she's a HUGE advocate for him with the school and family.  Kind of a disconnect there - obviously everyone cares about their OWN kids, but sometimes you have to take a step back and think about society.  (Basically the principal, the other friend, and I all told her "your only option, if you don't like it, is private school.")

Whoa - That paragraph is shocking to me! The behavior the kid in her daughter's class exhibited is very similar to what my son started doing in K (He threw a chair! Low point of my parenting journey) - but also at this point I would not at all be shocked for my son to get a late ASD diagnosis around age 9/10. The inability to deal with large group situations/stimulation and frustration is exactly why I think my kid might end up with that diagnosis.

Mine is either dealing with asynchronous development and will grow out of it, or is masking ASD very well - but only time will tell at this point.

mm1970

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Re: Parents of special needs children?
« Reply #55 on: March 13, 2019, 01:59:46 PM »


She did not like that answer, and then our other friend came in and gave her the same answer.  Funny thing?  Her older child is on the autism spectrum, and she's a HUGE advocate for him with the school and family.  Kind of a disconnect there - obviously everyone cares about their OWN kids, but sometimes you have to take a step back and think about society.  (Basically the principal, the other friend, and I all told her "your only option, if you don't like it, is private school.")

Whoa - That paragraph is shocking to me! The behavior the kid in her daughter's class exhibited is very similar to what my son started doing in K (He threw a chair! Low point of my parenting journey) - but also at this point I would not at all be shocked for my son to get a late ASD diagnosis around age 9/10. The inability to deal with large group situations/stimulation and frustration is exactly why I think my kid might end up with that diagnosis.

Mine is either dealing with asynchronous development and will grow out of it, or is masking ASD very well - but only time will tell at this point.
Yes, the throwing a chair seems very similar.  Likewise, my son had a very disruptive (more than your typical 5 year old boy) student in his kindergarten class.  I KNOW the school worked with him, just overhearing a conversation as I went by this year (the mom thanking the teacher, the teacher praising the student).  I don't know WHAT the school did (naturally), but he's in first grade now.  He's made HUGE strides.  He has, from what I can tell, a perfectly normal happy family life.  It takes WORK.

It's hard yo.  Our school has a large # of disabled students (we have a lot of special programs, and get transfer students).  My older son has had classmates with tendencies to disturb the classroom (and were moved to other schools with specific programs).  Our schools are trying to do a lot with so little.

There's a lot of parallel, as I see it, with the homeless issue.  A lot of people just "want to get rid of the offending persons".  But...they don't actually go anywhere.  They still exist.  These kids have needs.  Some of them will always have needs.  We can't (and shouldn't) ignore them just because they are different.

Teachstache

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Re: Parents of special needs children?
« Reply #56 on: March 14, 2019, 07:48:42 PM »


She did not like that answer, and then our other friend came in and gave her the same answer.  Funny thing?  Her older child is on the autism spectrum, and she's a HUGE advocate for him with the school and family.  Kind of a disconnect there - obviously everyone cares about their OWN kids, but sometimes you have to take a step back and think about society.  (Basically the principal, the other friend, and I all told her "your only option, if you don't like it, is private school.")

Whoa - That paragraph is shocking to me! The behavior the kid in her daughter's class exhibited is very similar to what my son started doing in K (He threw a chair! Low point of my parenting journey) - but also at this point I would not at all be shocked for my son to get a late ASD diagnosis around age 9/10. The inability to deal with large group situations/stimulation and frustration is exactly why I think my kid might end up with that diagnosis.

Mine is either dealing with asynchronous development and will grow out of it, or is masking ASD very well - but only time will tell at this point.
Yes, the throwing a chair seems very similar.  Likewise, my son had a very disruptive (more than your typical 5 year old boy) student in his kindergarten class.  I KNOW the school worked with him, just overhearing a conversation as I went by this year (the mom thanking the teacher, the teacher praising the student).  I don't know WHAT the school did (naturally), but he's in first grade now.  He's made HUGE strides.  He has, from what I can tell, a perfectly normal happy family life.  It takes WORK.

It's hard yo.  Our school has a large # of disabled students (we have a lot of special programs, and get transfer students).  My older son has had classmates with tendencies to disturb the classroom (and were moved to other schools with specific programs).  Our schools are trying to do a lot with so little.

There's a lot of parallel, as I see it, with the homeless issue.  A lot of people just "want to get rid of the offending persons".  But...they don't actually go anywhere.  They still exist.  These kids have needs.  Some of them will always have needs.  We can't (and shouldn't) ignore them just because they are different.

As a teacher who works with a significant number of high needs students, I really appreciate this statement. If you're putting your kids in public schools that serve all kids, well then, all means all. It's not always easy, but I believe that its necessary, rewarding, work by both students, teachers & parents.

To all who responded re: speech & behavioral therapy experiences, a very belated thank you. We pulled our son out of an unfortunately questionable daycare situation & his behaviors have all but disappeared. His speech is coming along & I personally don't see the need for speech therapy beyond what the public school provides at this point.

Interestingly, we had our son's 4 year check up today & his pediatrician & I had a long talk about the fantastic progress that he has made in the last year. We're both really proud of him.

Alfred J Quack

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Re: Parents of special needs children?
« Reply #57 on: March 18, 2019, 04:36:23 AM »
We have a 46 year old daughter with Downs syndrome who lives with us.
Our youngest has Downs syndrome as well (turned 3 years old 2 weeks ago).

Our oldes is somewhere along the autistic spectrum (turned 6 3 weeks ago), they haven't decided which one yet. He is socially awkward and has some weird motor skill development. He also had the language skills of a 1 year old when he was about to turn 4, went to special daycare-like school for it and enrolled in a special-needs school with regular level education last year.

Both sons receive developmental care by a payroller (paid for by the community). She says we are lucky, in some ways, that both kids have complementary needs. She often pairs both types because the strengthen each other rather than oppose, since she also has a son with DS we take her advice very seriously :)

frugalmom

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Re: Parents of special needs children?
« Reply #58 on: March 24, 2019, 08:36:30 AM »
Bit off topic.   Iíve spent 26 years teaching kids with every conceivable disability ďI say issueĒ to Swim.

I wrote a curriculum for Easter Seals at one  point. I get medically complex kidsóbrain shunts and extra surgical spots we need to make sure stay dry. Kids who have had strokes pre birth. Lots of kids on the spectrum.  One limb, 2 limb, 20 ICD-10 codes none of it matters. I only want to know if they bite, kids that bite on land tend to bite in wateróI donít like to be bitten so Iím more vigilant.

I see amazing things every time I get a new swimmer.  So many kids are able to relax when they get in water.  Itís fun to watch their progress.  Some kids never learn to swim but have safe water play time and mom & dad get a bit of a break.

This is now my part time job it was full time at one point but I was burnt outó40+ hours in a pool not swimming laps.  No thanks.  Now I work one night a week. I earn the grand sum of $10 an hour.  Insurance requires me to be employee not volunteer.  Most of the families pay little to no cost. I also train tons of other staff on how to teach unique populations to swim, teaching someone with 2 functional limbs is completely different than 4 as is teaching someone in a burka.   We also teach non verbal kids to swim using story boards. I could give 10,000 more examples.

The point of my post.  Find a qualified spot and let your kids try swimming.  Ask at Yís or any organization you can think of for a place people recommend.  Also always ask for a scholarship.

Additionally if your a strong swimmer, consider teaching lessons to this often underserved population. You get to think outside of the box and improvise.  I have thousands of amazing kids and families I have met over the 26 years.  I was a 16 year old kid teaching lessons when I first startedójust a life long swimmer, lifeguard, and a short class on how to teach traditional swim lessons. I was 16 and didnít know I wasnít supposed to teach my first kid with issues.  I made up so many different ways to teach that kid, because I didnít know I shouldnít.  To me a kid was a kid.

MayDay

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Re: Parents of special needs children?
« Reply #59 on: March 24, 2019, 11:18:31 AM »
^^ thank you for your dedication!

My DS just started on our community ed swim team, and his stroke is a hot mess, but he loves the water! It is so good for him.

Cassie

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Re: Parents of special needs children?
« Reply #60 on: March 24, 2019, 04:34:19 PM »
Once your child is 16 they qualify for Vocational Rehabilitation Services. Depending on the state itís either called a Bureau or Department. Itís 80% a federal program which is administered by the states and they contribute 20%.  Itís usually free unless your income is high and then services are on a sliding scale. Itís free for most people. I spent my career there. They provide everything you need to be successful at and/or training/school/work.  Starting at 16 we would assist with PHS training or living and refer out for what we cannot provide.  Many people are able to work at least part-time and often can live in a group home or own apartment with supports.  For example a person with Downís Syndrome is often able to work depending on their functioning level.  The counselor helps the clients come up with a feasible vocational goal based on interest, aptitude, academic achievement levels and their personality. Itís very individualized.  If at all possible I really encourage parents not to let a kid just be home after HS but to work, have friends, maybe not live at home and be part of the world. There are programs that employ people for instance to help clients grocery shop and many other services.


ilsy

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Re: Parents of special needs children?
« Reply #61 on: March 25, 2019, 01:31:56 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 daughterís will grow up and oversee his care as needed but in case that doesnít 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 Iím here for advise or a listen and a nod. I get it. Oh, do I get it. Iím with ya.

I have an autistic 11 year old who also has ADHD and is gifted in math. He has significant executive functioning deficits, delayed processing speed, and a lot of sensory challenges.

The sensory stuff has been a big issue at school, on the bus, and in group childcare. As many of you have e mentioned, it is those small things that can really make it difficult- we are hiring a nanny for summer childcare this year because DS just cannot cope with the chaos of the community center childcare. Trying to anticipate and work around 20 different things like that is exhausting.

I am pretty engaged with the autistic adult community in my city and they feel very strongly that a lot of autism therapy is very damaging- especially the traditional ABA model where you train your kid like a dog to be neurotypical. So that information our choices.

I think our son will be able to work and live independently with support. Luckily his academic strengths and special interests (computers, math, coding) line up with careers that are typically accepting of the quirks of autism. So we are hopeful that with someone (us until we die, perhaps then his sister or a spouse) to help with management of things like paying bills, etc, he will do ok. I do think he will need support though his mid 20's- we won't be able to just drop him off at the dorms freshman year and be done!

We are tentatively planning to fire when our youngest (currently 9) goes to college, so about 9 years. We probably could a little before then but we don't see much point when we are still beholden to the school calendar. But our son's situation will significantly affect that. We would definitely work longer to fill a trust (or whatever) that would provide him with a basic apartment, etc, for a worst case scenario. And probably similar if not equal for his sister. She will have responsibility for her brother (should she choose to accept it) and I want to compensate her for that.
My situation is somewhat similar to @Bittle and @MayDay.
My son is 10, he has Asperger's, he is very gifted in math, computers and coding, he is in EY tier 3 in math, keeps being in 99 percentile in all MAPS tests for our district (a very good school district), out of the charts for other math tests. Other parents would have probably wanted their son to skip a few grades, but I know that he needs social skills more than anything else. I have noticed very early, when he was 3, that he's different (his older sister is only 16 months older, so I had someone "recent" to compare him to). We started even before the preschool to "teach him how to appear normal." And he's doing quite well, now it takes a long time for people to figure it out, if ever. He has less problems at school this year, less classmates are making fun of him now, and he seems happier. But every time there is always a situation when he reminds me that we still don't have a script for every situation. He called me today to ask if I liked it that in the previous phone conversation he had hanged up immediately after he said , "goodbye" (he just wanted a confirmation that I approve this behavior). At least he doesn't ask me to confirm that his favorite color is red. Parents of "normal" kids just don't get it, they probably think that I'm a very controlling mom, if my child needs to ask me, "was it ok to hang up after I said 'goodbye'?" No, it's just my son wants a structure and a clear answer to every possible situation, a clear "yes or no" answer to every possible situation. In his world, I should know an answer to what his favorite color or movie is, and that there is a correct answer and someone other than him might know it for sure.
My fear is also that he could be taken advantage of. He trusts me now, but I don't know if that's going to be the case when he is 18 or 20. I'm "Love and Logic" parent, not a helicopter one, but with him I'm more of a drill sergeant/friend. It seems like it takes him more time to "learn" a lesson. Even though he knows that if he's not in the car by 830am, he is going to walk to school, after every summer we get a few "walk to school" days. I try not to bend the rules just for him, but it simply doesn't work for him to follow the rules like his sister does. 


cloudsail

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Re: Parents of special needs children?
« Reply #62 on: March 26, 2019, 10:55:26 AM »
So we just returned from a trip to Disneyland with our autistic son, and it wasn't nearly as bad as I'd feared. Note that we were only there because forced to by family, but all in all it turned out to be a fun trip for the kids. Disney's disability access service is very good, and I'm sure the trip would've been a lot more stressful without it.

Since Disneyland isn't a hot destination for Mustachians I thought a detailed write-up probably won't have much interest, but if anyone wants more detail about how DAS works let me know.