Mindset against help for special needs

[2xx1xy1JD]

I've posted my frustrations with That Wife not helping Bathroom Baby, and AD's parents being oblivious to the basic needs of her sister. After all, who WOULDN'T want their children to get appropriate assessment and therapy?

Well, here's a peek into that mindset: z11.invisionfree.com/JewishAP/index.php?showtopic=2767&st=0

Although this mother is a religious homeschooler, I'm not going to label it as a truly religious issue, because the other religious moms are telling her to suck it up and get the assessment, and because she clearly has her own personal baggage. I just find it both fascinating and frustrating to see this paranoia and reluctance to get help for her child.

[AnnoDomini]

Anyone else having the problem of not seeing the entire link with the DOTcom format? I like the format where the entire url is posted, minus the http part thus de-linking it. When I read the thread in question I shall probably be appalled.

[2xx1xy1JD]

z11.invisionfree.com/JewishAP/index.php?showtopic=2767&st=0

[FloraDoraDolly]

I've posted my frustrations with That Wife not helping Bathroom Baby, and AD's parents being oblivious to the basic needs of her sister. After all, who WOULDN'T want their children to get appropriate assessment and therapy?

Well, here's a peek into that mindset: z11.invisionfree.com/JewishAP/index.php?showtopic=2767&st=0

Although this mother is a religious homeschooler, I'm not going to label it as a truly religious issue, because the other religious moms are telling her to suck it up and get the assessment, and because she clearly has her own personal baggage. I just find it both fascinating and frustrating to see this paranoia and reluctance to get help for her child.

Since this came from an attachment parenting forum, that may be the issue more so than religion. I've met more than a few attachment parenting whackos, including one who told me it was child abuse to put a baby in a playpen at all for any reason.

[2xx1xy1JD]

There is a point where any reasonable good suggestion, philosophy or technique can cross the line into dogma. Homeschooling and natural health can be reasonable options for some people, but I've also seen it morph into a quasi-religious position. Seriously, 2 doctors express concerns about your child, and the first thoughts are "oh no! They may suggest we stop homeschooling, or that we use meds!"

[liltwinstar]

I think some people just have a gigantic mental block against meds, for whatever reason. Also, some people think that if their kids are "labeled" (ie, diagnosed) they'll face more difficulty than if they just ignore the problem.

My mom is like that. Doesn't trust doctors, doesn't trust meds, etc etc. I don't think it's a rational thing - to my knowledge, she hasn't had any reason *not* to trust doctors. It's just a mental block she has.

I don't understand that mindset. I think even the crunchiest of people would want to know if their kid had cancer, yet they'll bury their heads in the sand about ADHD, Autism, etc etc. Further, I'm *glad* that we have medications that can help people cope with their mental issues!! Why would you deny your child that kind of help? I just don't get it.

[emmiedahl]

The mother was so concerned about anyone intruding into her life and so unconcerned about her son... that was hard to read.

[Mama Mia]

Almost all the other posters in that thread all encouraged the woman to have her kid assessed, and the forum has a whole category for kids with special needs that includes lots of assessments/ interventions. It seemed like the mom was mostly freaked out because of her own history, and because of the 'social services' threat - which is pretty intimidating. I would think the behaviors must have pretty severe for the dr. to be that adamant.

Having special needs kids in my family .. I do see that there is sometimes a rush to medication when that might not be the most appropriate solution, but other times it can be very, very helpful .

[Conuly]

Also, some people think that if their kids are "labeled" (ie, diagnosed) they'll face more difficulty than if they just ignore the problem.

Which is absurd. Do they think that "stupid", "lazy", "difficult", "weird", etc. aren't also labels?

[FlorenceHamilton]

Twenty-three years ago, when my son was a preschooler, it became obvious that he was different in some areas. During infancy and toddlerhood, he had some odd behaviors, but he was hitting his milestones at or before target, so I just watched and hoped. The behaviors were really subtle, but enough to make his mom keep a close eye. Anyway, I had him evaluated at about 3 1/2 by the Children's Hospital in the city near us. At about that time, his preschool teacher called me and told me that she saw problems and that she was doubtful that he would eve make the transition to a regular school classroom.

We began interventions on our own (we did not get government funded help as his issues remained subtle and they withheld services. Finally, in first grade, I requested an IEP. The findings were that he had ADD, which is not covered by special ED and he had behavior problems. They told me they would onlt give him services at 10% with an Emotionally Disturbed label. (Knowing full well that i would not accept a label like this for such a minimun amount of help.) We continued to get my son the help he needed to learn to read (He was not reading by mid-first grade, but the school felt that he was not far enough behind for special services.) We also got him OT because he had poor hand-eye coordination and balance issues that made him clumsy. It was especially heartbreaking to watch when his younger sister started reading when he could not. (my heart was so happy for her to be an early reader and so heavy for him to see this and feel so helpless.)

Anyway, we made the financial sacrifices we needed to in order for him to get help. We finally decided to move to a better school district. By then, my son was in 3rd grade and was nearly at grade level academically. He was still having difficulty in the classroom. The new school got right on it and put him into programs designed to augment his social skills and help him organize his emotional world.

One of the lessons I learned was that the people who either do not wish to release the funds for your child or who have some sort of mindset against early childhood intervention are really big into saying, "You don't want your child LABELED, do you?????" One of the therapists we worked with told me that the answer to that question is YES. You cannot get help wothout a label. But be careful about what that label is. I was correct to turn down a label of Emotionally Disturbed. However, a label of OCD, ADD, visual and auditory processing problem, social processing difficulties. These labels are necessary in order to get help. You younger moms probably have even better labels to describe learning challenges.

My so continued to make good progress. He sometimes functioned without any new interventions. We continued to use the tools and skills that the various therapists gave us to help him along. At certain milestones, we needed to get professional help until he reached majority. He was on ADD meds as a small child and on SSRI meds as an adolescent. He was off all meds for many years after turning 18. Last year, the girls and I staged an intervention and get him back on an SSRI.

Bottom line is that interventions work. My son is 26. He is a college graduate and has a job in his field of finance. (Which is hard to do in this economy. He would rather have a seat on wall street than in a small investment firm, but he is working in his chosen field and he is doing it about 30 miles outside of NYC, so he is doing ok). He has a large group of friends. He is athletic and not at all clumsy. Golfs in the 80's. He still struggles with girls. He says that he really has trouble reading girls' signals and often messes up. He also loses patience with this and just gives up, even when things are going fairly well. Fortunately, he was taught that getting help is a good thing. He is relying on his sisters to guide him in this arena, which is fine.

I don't know what happens to these cultish folks who think that the "state" is out to get them. The parents should be active participants no matter what outside government services you use. It seems to me that homeschoolers sometimes need educational services beyond their capabilities and should use those resources. Public and private school children need to have their parents involved to monitor and augment their education. Why is this so difficult?

[Bella99]

Sometimes people are stuck in a mindset where they can't face the idea of anything being "wrong" with their child. My dear friend's daughter got invited to leave preschool before she had her evaluated - turns out the child has OCD.

Her Maj nearly flunked out of kindergarten at "Very Expensive Montessori" because 1/2 way through the year she lost focus. We had her evaluated and it turned out that she had ADD, was reading at a 2nd grade level, and highly gifted. Very Expensive Montessori would not consider moving her out of the 3-5 yo class or making any accomodations whatsoever and thanks to a Sept. 2 birthdate we were stuck there for the rest of the year.

Contrast that with our principal meeting with me the Spring before she would be attending, being willing to accelerate her as soon as her age qualified her for public school, and making a spot for her in the Spanish Immersion program which provided the extra challenge she needs without putting her in a situation where she would always be the youngest in the class. We have been overall very pleased with our experiences there.

[MamaJunebug]

Not to threadjack, but a friend of mine homeschooled in part because she didn't want her daughter labeled. Kid still couldn't read at age 12. She did eventually learn to read, IIRC, but the situation made me go, "Whuuuh?"

Here's the potential threadjack: What do you all - those who have been through similar situations - think about a child unable to read at 12? Eyesight was fine, she seems to be a fine young woman (she's about 19 now).

[NothingLeftToLose]

So I have some special needs kids and this type of thing is very real - and it crosses all socioeconomic, geographic, and religious boundries.

It is sadly very common. I attend a special needs parenting group and we have parents pop in all the time to "tell us why the doctors/school, etc are WRONG and their child is just unique/special/has a bad teacher/is just misunderstood"

It ranges from the very mild denying of diagnosis to the extreme of refusing life saving treatment (Jett Travolta springs to mind here)

At the end of the day, I believe in freedom of choice, freedom to choose medical intervention or not, freedom to parent with out excess invervention - BUT there has to be a point where endangering a child's welfare becomes more important than the rights of the parents.

[sugaree]

I think a child who can't read at 12 is in a terrible situation, especially if the adults around her are making no efforts on her behalf or have no plan for her in place. Even if the young woman can read today, I'm sure with that background she isn't at her full potential.

[Bella99]

This is why I think homeschoolers need much stricter oversight. I know some who do a fabulous job, but it is just too easy for a kid to fall through the cracks. (If I knew a 12 yo who couldn't read I'd call CPS and report the parents for educational neglect.) I understand milestones vary, but if my child could not read by 8 she'd be having a full physical, psychological and educational evaluation. I know there are other ways to teach and learn but reading is so essential I cannot understand why her parents didn't make an early effort to help her. What is worse a label or wasting years she could have been reading? So much of my own body of knowledge is there because I loved reading.

[kb2]

My vote is just denial. I think that taking action about something can make it real in a way that can be very overwhelming and scary. You can worry about something while you procrastinate on doing anything about it, but actually taking action can be surprisingly emotional.

[gardenvarietycitizen]

My vote is just denial. I think that taking action about something can make it real in a way that can be very overwhelming and scary. You can worry about something while you procrastinate on doing anything about it, but actually taking action can be surprisingly emotional.

This sounds about right to me too - plus what others have said, I think the mother is projecting her own discomfort at being "labelled" as a child onto her son.

Is this her only (or oldest) kid?

Add to that, particularly if it is her only or oldest, she's probably had this image of what life was going to be like, homeschooling her kid(s) and being free spirits or whatever it is, and so she's terrified that coming into contact with therapists, they're going to override her and take that life away, her kid is going to be assimilated into "the system" and no longer pure and free. Her identity, in a way, is being threatened.

Completely apart from her special case, it seems that lot of people really do fear the idea of medication for anything brain-related, as if somehow it's similar to being on illegal drugs, that you'll be "doped up" and not yourself, or else that it's somehow "cheating" to take drugs, you should be able to get through all problems with pure willpower, or something.

I'm curious to know what his issues are, anyway - sounds like he starts flapping around when overly excited, or something?

[keen23]

OK, I read a blog where a mom of 6 (#7 on the way) has a Down Syndrome child, and she is very much against early intervention programs and even therapy. She is also fond of using the argument that the best therapy is interaction with her child and with her other children. This woman does not homeschool, and is an atheist. Her child is not the main focus of her blog, but her battle with the school board against her child getting services was a big topic this year.

[emmiedahl]

Also, this is a Jewish board. Are they orthodox? I have heard that having diagnosed mental illness in your family can really hurt you in the marriage market. Maybe she is trying to protect her other children... but still.

[gardenvarietycitizen]

Interesting, keen23. What's that mother's main argument against early intervention? I assume kid #7 is headed for school along with the other 6?

Also, this is a Jewish board. Are they orthodox? I have heard that having diagnosed mental illness in your family can really hurt you in the marriage market. Maybe she is trying to protect her other children... but still.

I kinda wondered about that myself when I saw the one comment mentioning "will he be able to get married" but not sure.

[Austin]

FlorenceHamilton, your son sounds so much like mine, except without the ADD. Auditory processing issues, fine motor coordination issues, expressive/receptive language issues. Our guy is doing well, and I am so hoping he can get through college and find a field he enjoys (it will most certainly be something with numbers). Your story gives me hope!

As to some of these parents, fundie or not, they somehow believe that the issue is about them. When we were dealing with this stuff with K in elementary school, in talking to other parents who were at the special ed meetings, etc., I was often horrified at some of their attitudes. Yes, I get the labeling thing, and would not want "emotionally disturbed", for instance, but at some point, why is a "label", such a big deal? I remember saying in frustration to one woman, who was bitching about the school refusing to service without a diagnosis and she didn't want a DX because that would mean a label, blah, blah, that they could "label" my son a purple alien if it meant he could get the proper services on a frequent and regular basis. She wasn't very friendly to me after that :D

[emmiedahl]

Those labels don't "stick" indefinitely, either. I think a lot of parents don't get that. One of my brothers is rapid cycling bipolar and he went through more than 20 diagnoses before he was correctly diagnosed. No one calls him ADHD or Tourette's now that we know what the real problem is.

[Terrie]

As a person living with labels, I love mine. It is very important protection for me, because without them, I couldn't get the ADA protections and accommodations that I need. This fear of labels bugs me. I remember reading an interview with Jenny McCarthy about when she got an autism diagnosis for her son. The doctor (rightly) pointed out that it didn't change who her son was, but she really thought it did. All the things that she'd thought were quirky and cute were now proof of how autism had "taken away" her son. That attitude is probably the most damaging thing I've ever encountered.

[liltwinstar]

As a person living with labels, I love mine. It is very important protection for me, because without them, I couldn't get the ADA protections and accommodations that I need.

That is a very good point! Also, I'm sure having a "label" (diagnosis) helps when talking to doctors, therapists, etc. They have a place to start.

[nuri]

I <3 my label too. Being able to say that I have ADHD, and that I'm not just lazy or unorganized for no good reason is reassuring. And the resources I can access to get help when I need it because of my label, because of my wonderfully different brain? Awesome.