Wednesday, February 29, 2012

Minorities, Late Autism Diagnosis, & IEP Meetings...












(ORIGINALLY WRITTEN & PUBLISHED ON FEBRUARY 29, 2012)



I read with great interest today's big autism news story, "Study: Autism Detected Later In Minority Childrenand it made me very very sad.   

I encourage you to read the whole article from the cbsnews.com site HERE but if you're too lazy here's the major take aways from the article...


  • "Autism should be diagnosed as early as possible, but minority children tend to be diagnosed later than white children. New research is beginning to try to uncover why - and to raise awareness of the warning signs so more parents know they can seek help even for a toddler..." 

  • "Even when diagnosed in toddlerhood, minority youngsters have more severe developmental delays than their white counterparts..."

  • "Cultural differences in how parents view developmental milestones and how they interact with doctors may play a role..."


  • "Tots tend to point before they talk, but pointing is rude in some cultures and may not be missed by a new parent.... Or maybe the mom's worried that her son isn't talking yet but the family matriarch, her grandmother, says don't worry - Cousin Harry spoke late, too, and he's fine. Or maybe the pediatrician dismissed the parents' concern, and they were taught not to question doctors..."


  • "Studies show that white kids may be diagnosed with autism as much as a year and a half earlier than black and other minority children, University of Pennsylvania autism expert David Mandell said, who led much of that work. Socioeconomics can play a role, if minority families have less access to health care or less education. Mandell found in one of his studies that black children with autism were more likely than whites to get the wrong diagnosis during their first visit with a specialist...."



Ok, now back to me.  Autism Daddy & family live in a pretty big city with a pretty diverse population.  There's a lot of immigrants ("off the boat") who live in my city, and a lot of second generation Americans.  There's a lot of Irish, Italian, Latin American, Jamaican, African, etc.  I live in a real rainbow of a city.  And I love that about it most days.


Financially the population runs the gamut too...some mid-middle class, some low middle class, some out & out poor. 


And while this article was about minorities getting a late autism diagnosis, it made me think back to something that's been gnawing at me for years. 


So when I go to my IEP meetings at my city's Board of Ed headquarters every year and I see the things my school district tries to pull over on me & my wife it blows my mind.  The wife and I are a couple of white English speaking college graduates.  And my son has a slam dunk case of severe autism. 


But the incompetence of my school district never ceases to amaze me.  And the bureaucratic red tape & nonsense is flabbergasting.  And if you are not extremely careful your kid may be left out in the cold.  It's a combination of they are intentionally trying to screw us to save money along with being undermanned, understaffed and incompetent.










We were victims of this.  It happened to us this past September.  Our son slipped through the cracks and had no school placement for the first 2 weeks of the school year.  And it took us "lawyering up" (and spending over $1000) and it took alot of advocating from me & the wife to set things right.  I had to take quite a few days off from work back in Sept for school tours & lawyer meetings.


What does this have to do with today's report?  Well the report is about minority kids getting diagnosed later, but how is the quality of their services once they are diagnosed?


We've come out of IEP meetings, me, the wife, our team of therapists and advocates, and more than once I've seen a Latina mom waiting in the waiting room with her autistic child waiting for her IEP meeting.  And my HEART BREAKS. 


This woman doesn't speak English very well.  The school board probably brings in a member of the board of Ed to act as a translator.  She has no "team" with her.  She's probably there on her lunch hour or had to take the morning off from work.  She couldn't get a sitter so she dragged her poor kid to the meeting. 


If they tried to screw us, how is this woman gonna get a fair shake?  Can she trust the translator?  And how many are out there like that in my city alone?  


When Kyle was out of school those 2 weeks in September he had a special ed teacher come to the house for an hour a day.  And she told us HORROR STORIES about kids from our city who have slipped thru the cracks, who for one reason or another haven't been placed in a school for YEARS.  Some with autism, some with other disabilities, but almost all from poor minority families who just believe what they are told and accept what they are given.  And these kids have been receiving weak at home services.


So if you go by the article, at least where I live, if you are a minority AND you don't speak English that well you are ROYALLY SCREWED.  


Your kid may get diagnosed late and then when he does get a diagnosis you have to expect to get screwed by the board of ed at every turn.


Maybe this only happens in my city?  Or in big cities?  Or maybe it happens more that you even know, but you just don't see it in your city because your IEP meetings go so well.  You are successful advocating for your child.


But what about that single mom who has the IEP meeting after you?


As hard as it is to have a kid with autism, and how awful my big city school district has been with us over the years, this is one case where I'm glad I'm a white male that speaks English and I'm glad that I've got a flexible job that let's me take time off for emergencies (like IEP mtgs) and I'm glad that I have enough $$ to hire a lawyer to fight the system when necessary.


That's all I got.  Whataya think? 


:-)

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41 comments:

  1. Oh, you are so spot on about this. Hear me out. I'm a parent of three kids with varying degrees of autism. I'm also a teacher. I have a list a mile long of what "not" to say to parents. Don't dare suggest that they need to look again at their kid's services. Never tell a parent when you see that something might be unusual about a child--including suspected learning disabilities, etc. I've taught several children who were getting screwed by the system that I KNEW qualified for services. I privately hinted as broadly as I could to the parents, but I really feel for those who don't have the education or money to advocate. It's heartbreaking. And what's sad? The system depends on the majority of people having little to no knowledge of the law and advocating.

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  2. I don't think it's your city alone; it's everywhere. And it's sad. Our district refused to give a diagnosis in the IEP so that I could utilize our state scholarship money to handle things privately. I had to see a pediatric neurologist to get a diagnosis. Now my daughter enjoys benefit of a shadow (tutor) at preschool, ABA therapy at home not to mention speech 1 hr per week and this is not coming out of my pocket. The change in her has been dramatic. If I kept her in the district, she would get 5 minutes of special ed time per morning and two 15 minute sessions of speech per week. I suppose it's better than nothing. I don't know if every state has scholarship money available like Ohio, but it's worth checking out. You only need a diagnosis (in Ohio) and your family income doesn't factor into receiving money at all. The problem here regarding scholarship money is that the district never tells you. You need to do your homework and pray that someone tips you off. Thanks for posting this article. Maybe it will open some eyes.

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    1. The only problem here in Ohio with the Autism Scholarship is that you have to prepay for the ABA therapists..in most cases. So, bascially a low income family gets screwed, again. We found 1 psychologist in Columbus who took us on and paid all of our ABA therapists and the AS reimbursed him every 3 months. So, once again you have to be able to afford to be given money! I feel so badly every single day for kids who dont get the help they need~ hopefully the government will fess up sooner than later and start paying attention to this awful epidemic.

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  3. Heart breaking. In IFSP meetings (we homeschool) I have to stand at my full height, use 4 syllable words and be unemotional and clinical for things to just remain the same, forget getting more! I'm a Jamaican mom who's been to grad school and unfortunately has to really wave what I know in their faces for things to go smoothly. Nonsensical roundabout illogical reasons given for denying services that require 15 page reports from 2-3 other expetst to refute. It's really sad. And tiring.

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    1. I totally agree with you. I wave the law in front of them too and it gets side-stepped every time. My daughter was just diagnosed, at 8, which is really late in my opinion but I had to fight the past four years just to get direction on where to go to get this far! Being in ny, it totally sucks. We are extremely overtaxed here and told the resources just aren't there for everyone. Being white and not a college graduate but pretty well educated myself, I would like to think I have become a strong advocate for my girl. Doesn't necessarily mean the services come easier because I know our laws and rights. Only way I became educated is thanks to the good ol' internet. I feel for the families that get raked across the coals...

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  4. Fantastic! My son will be 3 in April and I have been warned to fight tooth and nail at his IEP meeting. This story saddens me. We met today with the Autism coordinator in our district and I had some hard questions for her. How do I go about finding my board meetings? You said its annually? I know IEP is annual but what about monthly board meetings?

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  5. I am a TSS and work with children with autism and i watch the families i work with fight to get services everyday. There is a family I work with who does not speak english very well and the school district has tried to screw them over more times than i can count, luckily her oldest son is very proficient in English and can translate for her, I cant imagine what would happen to their services if she did not have someone she can trust that could translate.

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  6. I am a SpEd teacher and I work in a public school in a low income area. We service many different ethnicities and have a very high population of non-English speaking parents and children. The district I work in is pretty good at providing services to children in our specialty programs - we are a work in progress...

    The fact that our schools are owed millions of dollars from our government could be the topic of a whole other blog post...it is definitely a factor in the type of interventions or services we are able to provide, but that is no reason for being down-right sneaky and giving parents the run-around.
    One thing that I have found scary working in this community, is the number of meetings I have been in where the team has provided evaluation data that supports a diagnosis of Autism and the parent has refused the diagnosis. There is a certain stigma associated with having a disability - especially with certain ethnic groups. In our state a medical diagnosis of Autism is required to access outside services so an educational diagnosis is really only important if the student is going to be educated outside of the public school. It is still frustrating to deal with though because many of our families are very transient and it's difficult when they transfer schools to set up the appropriate services and placements when the diagnosis is not there.
    I also experience the other side of the fence with my own daughter. We live in an area that is considered middle to upper middle class. When we moved here I called the school district to ask about their programs and was told that they wouldn't discuss anything with me until my daughter was registered. The people I spoke with were EXTREMELY rude. I hung up, called back the next day, asked the same question, but added that I am a special education teacher. I was magically transferred to the Director of Special Education where all of my questions were answered, I was offered a tour of the school and their specialty programs, and I was told that if I wanted it the school would even be open to out of district placement. That pissed me off more than my initial phone call. Why do I have to play the "I'm a teacher" card to get simple answers? It's absolutely unfair to the people that are not as aware of "school politics" and just accept what they are told as being true.

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  7. I want to cry reading this.
    In Ireland, small as it is, services vary enormously from area to area. Like you, we've had to go the legal route over a few issues where the 'powers-that-be' attempted to bully us. Like you, we are white, English speaking graduates.
    In Ireland, they are painfully sensitive of racial issues, as having ethnic minorities is such a new thing here. It was a country populated with white, Irish Catholics, until the Celtic tiger in the 90's attracted refugees from Africa and eastern Europe (mostly economic refugees, but many to escape female circumcision).
    Now the authorities are very careful to bully everyone equally.
    Most of our refugees and immigrants are very well educated people (it's awful to think of their fellow countrymen who are too poor or uneducated to escape) so they appear capable to fighting their own corners.
    I try so hard not to be cynical, but politicians only care about their careers and if they can screw us, they will.
    XXX

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  8. Oh, I think you're probably right. I think that mom is probably hosed.

    The politics of it are painful, but if the district is trying to save money (our district has really been cut this year), they will NEVER come out of the gate offering your child all the services he/she qualifies for. And that's a shame. So the only way to cut through that (because budget can't be used as a reason to withhold services even though it TOTALLY is the reason) you have to advocate, lawyer up. . . whatever.

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  9. I noticed when we, my team, left our IEP meeting once there was a mom who was there my herself waiting to go into her IEP. I show up with 'people' and the school, who knows us by now, shows up with their 'people' but it did trouble me as to where were her 'people' to help her out with her meeting. Troubling also is when we have open houses at school, we are the only and I mean only family who show up to see my son's classroom. I know this because the teacher tells me this. So sad.

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  10. I have a dream to start a charitable foundation. one of the big things I want this foundation to do is to provide free assistance to all who need it to navigate the system - whatever system they happen to need to be working within. Paperwork, being able to understand what is going on...so often the people in most need of services are the least equipped to navigate the tangle of government bureaucracy that inevitably exists.

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  11. It's definitely not just your city. I suspect this happens everywhere and it is maddening. I remember before my daughter was diagnosed, while we were getting services at home through Infants & Toddlers, the therapists told us that "off the record" they suspected autism. "On the record" they couldn't tell us anything, but I am so glad that they broke the rules and gave us their real feelings on the matter. It's upsetting because this is supposed to be the first line of services and they are being told to not be honest with parents.
    I have friends that are very well educated AND know people in our local government, yet still were unable to get the services their non-verbal, severely autistic son desperately needed. I believe they even had an advocate go to meetings with them. They ended up moving to another district, out of state where they knew services were better. Someone without the finances available would never be able to make a move like that.

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    1. They can't tell you "on the record" because they are not in the position of diagnosing. They aren't doctors. I'm guessing your Infants and Toddlers is like our Parents as Teachers. Our coordinator couldn't tell me what she thought was wrong with my son(besides the usual parent stuff), but she could suggest that we seek help in the medical community. They aren't trying to pull the wool over people's eyes. They just can't suggest a diagnosis they aren't authorized to diagnose. They can, and hopefully will direct you to services to help you get the diagnosis.

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  12. I'm going to thank my lucky stars repeatedly for giving us a few good, easy years - without letting down my guard for what the next few years (transition) hold.

    We've been very lucky so far. I insisted hubby come to the IEPs with me initially. I'm 6', no-nonsense & know my stuff, talk the talk so I don't intimidate easy. I work on the "kill them with kindness" method - never stop smiling, praising, don't raise your voice - make them quiet down to listen. :o) My sister is a 1st grade teacher in another state who fills me in on the "tricks of the trade".

    We've only had one bad placement. Moved when my son was 3 and he entered a county program. Since he was not a behavior issue, they'd stick him on a computer for the whole class then back on the bus. Speech therapist would never show up unless I was coming in to observe. I didn't know any of this until a summer substitute teacher pulled me aside and told me "get him out of here!!!". I fought for him to go to a wonderful autism program elsewhere. Nicely told the superintendent "You say it's an appropriate placement, I say it isn't. We can go through the due process and fair hearing, but I'm really lazy. How about we just arrange the classroom visit, eh?" He fit beautifully into the class and was placed there within the week.

    Our new district is tiny - about 100 kids per grade. They've been great working with Matt. Anything they can't figure out behavior-wise, they call and we discuss it. I've been invited into classes to observe and make suggestions. But he's getting older & puberty and all. The learning support teacher is helping me get all my paperwork together to get a state funded TSS in for Matt for 8th grade (next year). I'm glad they're informing me way ahead of time and helping me prepare.

    But I know I'm very, very, very lucky. We fled California due to the educational cuts that were going to hit special ed. Once my hubby found a job, we called and interviewed not only the state office for special education, but several school districts around his new place of employment. We paid more for our house than the surrounding area just to make sure we were in this school district.

    My heart breaks for the people I talk to that have a harder path. I did find early on that there are some tricks that help in IEPs. First, I always do a write up of where Matt is presently. I include our hopes and expectations for him. Now that he's older, I have him write up his expectations & needs. I find the cutest, most handsome picture of him I have and put it on the title page, covering 3/4 of the page. It shouts "this is a human you're talking about - don't you forget it!". Whenever I have official communication with special ed, county, state, I have a picture of Matt in the upper corner of my letterhead - again reminding the reader this is a person we're talking about.

    If anyone would like a copy of what we used for the IEP/letterhead, let me know.

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  13. I've been extremely fortunate in my dealings with the school district in general. I'm a single mom and my daughter has often had to sit through her IEP meetings b/c I simply cannot afford a babysitter and she can be quite a handful at times - it's just easier to have her with, and she's largely oblivious to the fact that we're talking about her. The district we used to live in was absolutely fantastic, despite the fact that it was a lower-middle income district, but I'd always made it a point to connect with the teachers, office workers, & therapists as much as possible so that helped a lot.

    My biggest issues came when we moved to a higher income district, b/c they didn't know me or my daughter they seemed less willing to fight for what she really needed. I had to establish those connections at the new school.

    I had to make a bit of a stink to get her OT services started when we moved recently, but part of me thinks the fact that the district only has one OT to cover 8 schools may have something to do with that.

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  14. You are 100% correct, and it is rediculous. My heart was breaking just reading through this post. I live in SC, (originally from NYC), and I am finding there there are no services here for autistic children. We are considering going back home to the "big city" where there are services, even if we need to fight tooth and nail to receive them.

    I've just blogged about a grandmother that I meet while at the pool yesterday. She was there with her 3 year grandson, who has severe autism, and is being offered no services at all. This woman is at her wits end...I've been searching all day on the internet and making calls but I can't seem to find anything to help her. So I decided to write a short blog post, hoping that someone else with children on the spectrum in this area will read it and offer some kind of insight or advise. It was all I could think of to do at this point.

    You can read about it here if you'd like...
    http://aspiewriter.blogspot.com/2012/08/aspergers-autism-services-in-florence-sc.html

    I'm hoping someone out there knows more than I do!

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  15. Hi

    This is a good post and one that needs to be brought to light repeatedly. I live in Rhode Island , with over 32 districts and each district has their own special education department. I am also a single parent (no longer fighting with districts -- I home school) but your post theme/ problem is repeated in every district in our state and it appears nationally as well.

    The thing with our district is its about who you know and how well you play the "game". The people that can't afford lawyers have almost no chance of getting exactly what they need. There is a protocol set up to handle "disputes" , but it is lengthy and while you are doing it the child sits in their crappy placement.

    Many here don't have a team of professionals that go into meetings. Many here go into a meeting with just the parents, in some cases they take in their "at home therapists/agency" but I've even had the clinicians of those agencies tell me their frustrations (back when I was advocating and getting things for my child that none of their families could)

    I blog on autism. I write under special education on examiner.com and have two facebook pages related to special education. I see what this post is about often. It's sad, but its also disgusting. The amount of time to fight for placements and services is ridiculous.

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  16. it's terrible everywhere-I spent the past 2yrs fighting to get the school to recognize a medical dx of asd-fought them suspending my son, fought them in how he was being treated/mistreated, & finally got the iep that put asd on his iep-FINALLY...only to have that meeting scheduled on short notice, my advocate couldnt make it period & they refused to reschedule to allow for my team-I went alone, got confronted with a picture painted of my child as the model student who didnt need all these accomodations-sensory breaks & his brushing being the 2 biggest they want to do away with-at a teacher recommendation because she doesnt have the time to fit this into his day...the ONLY reason I signed off on this iep is that I go back in a few weeks for the annual spring one for next year-I feel like I was royally screwed & that my child is being shafted-we were s'posed to be able to get him into an asd program of some sort where they would know his behaviors for what they are, understand how to reach him academically etc-instead they patted themselves on the back at his great grades (which have fallen this semester quite a bit, but then again teacher was fudging on his grades 1rst semester to make her look better at teaching him)its a mess-we've few options where we live is the saddest part-am going to hit the ground running about placement at the next meeting knowing that placement is my #1 priority & that they will have all summer to figure out their staffing issues...& I will have to figure out how to teach mine up to the same place his siblings are academically...he knows his work isnt the same as theirs (they are all same grade) & its horrible...he is capable IF they attempt to reach him...

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  17. I really have problems with the school district -- & I live in a pretty good district. But the gameplaying never ceases to amaze me. And, no one is uncaring. But they are overworked, underpaid, understaffed. And frankly, too often the HR department makes cruddy choices when hiring.

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  18. It happens in Canada too. It is particularly bad for Native Canadians (Indians, to be politically incorrect). I know of one woman who moved off reserve with her husband and son, away from all of her family and friends and extended support system so that she could get any kind of service for her ASD son. Being on a reserve is a double whammy, there are few specialists who can diagnose and the government plays hard ball. Our early intervention and education programs are provinically funded. Even though these reserves are located in a province, they are run through federal government, not provincial, and there are no federal programs for special needs kids. There is also the institutional racism that assumes she is uneducated and uncaring and she has to fight much harder than I and my husband, who are highly educated white people. We have the luxury of my staying home with my son, so we can use more in home and community services, and my husband has a flexible job so he can attend IPP (our version of the IEP) meetings, like you.
    Several people in my autism mom's group have said that people with dark skin and/or heavy accents have a much bigger battle for diagnosis and services. Sadly, this racism and double standard occur everywhere.

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  19. My son was born premature, and was delayed. The doctors at the neurological clinic I took him to at his 9 month check-up said "He's delayed, but that's to be expected, being a preemie". They said he wouldn't qualify for services. Well, it was what I wanted to hear but in my heart, I knew was a brush off. Thank GOD I have a pediatrician who its a pushy son of a bitch. He demanded that I get the evaluations. I had EI evaluate him, and he qualified for PT and OT by age 1. Then special education and speech at 18 months. When he got old enough (age 2), was ultimately diagnosed PDD-NOS. At that point we added ABA. Had I listened to the recommendations of that clinic, and ignored my pushy ped, my son would have had a delay in diagnosis. More education needs to be given to parents about the early signs of autism.

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  20. This is something I need to comment on. I am a single mother. My daughter did not get her official diagnosis until last year (when she was 7, just before her 8th birthday). I ignored the initial symptoms because I was a young single mother living in denial (plus I thought it was my fault she behaved that way.). Even now with an official diagnosis, I have been fight the school system where we live in Texas the whole time. She's been technically homeschooled for the last month since we moved because they don't want to provide transportation and I have no way to get her to the school. We are a low income family (I make less than $400 a month). The best part about all of this? I am white. I am very intelligent. But I do not have the money for a team. I do not have the money to take them to court. And so we are screwed, thankful for whatever services medicaid deems we are allowed to get.

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    1. I am so sorry to hear that you've had such a hard time. I'm a single mom too. I live in Quebec (Montreal). I had my complaints about the system, but given what I've been reading on this thread I think we have it better than many.

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  21. Your blog is really helps for my search and amazingly it was on my searching criteria.. Thanks a lot.

    autism dublin & HSE autism

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  22. This makes me sick because it is so true.  We have already felt this before with Trevor.  Being a single mother... the doctors dismissed me saying Trevor needed more discipline or that I changed his environment so much that he was reacting to what I DID TO HIM!  The doctors were always so quick to blame me simply because I was A SINGLE MOM.  Then when I met David and he started on the journey with me.. doctors started listening more.  WHY?  Because he is a white man.  That is sick but so true.  Why is it that our society won't take minorities or women seriously?  Why does it take a white man for them to stop and listen?   Then things started  happening.  But still we have to watch them.. Everything costs more than it should until you start asking questions.  The meetings are ridiculous and really hard on Trevor until you start getting your man involved.  This is sick and it breaks my heart to wonder how many children are slipping through the cracks because our society sucks.  My son almost did. 

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  23. This is so true. I see this all the time and it is sad. The school districts all over the US are doing this to poor uneducated families. I home school my son. It is not always easy but I could not imagine having to deal with public schools.

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  24. Thus really breaks my heart!!! Sharing!

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  25. There has to be a better way to help. We had ABA therapists attend our child's IEP with us, and without them there, we wouldn't have known to even ask for basic things that were not initially offered, like transportation. And I finally understood Autism Hippie when she wrote "never say you can't afford...." during an IEP meeting. You need to at least pretend to be able to afford the attorney you're probably going to need to threaten to hire....

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  26. We played the we will get a lawyer card, we both ( my husband and myself both work for a large well known university,we get a certian amount of free legal stuff. Our son has no homework, i refuse to sit for 4 hours begging him to do 1 page. after 8 hours in school a day he is done, DONE,past done. He will be homeschooled next yr. He hates school, its too noisy,The large city we live in doesnt have a high functioning school or classes, only for low to mid functioning. My son is 8 and reads @ a 6th grade level. He does math @ a 6-7 grade level and his sciences are college. They suggested for my bright son that he might need an exercise ball to bounce on in class to help with the sensory stuff, or he might need to be walked around the school...What the hell is he a dog???? My sons kindergarten teacher told me my son had something wrong other than adhd, He never used scissors, he wouldn't sit still, he wouldn't interact with the other kids,etc. Last yr , the LAST week of school the CST decided to start his eval,after I got not 1 but 2 diagnoses of ASD specifically aspergers. He is in main stream classrooms because he tests to high to be in special ed, butthey dont have an autistic school to meet his needs, they wont ship him out of district, he does have an aide,she is a godsend! Tests are performed orally or with a scribe. his writing is horrible. ugh I guess we all need to go to Washington or our individual capitals and change the laws. Our kids deserve much better than what they are getting.

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  27. Its like that in alot of places. Were I live there is next to nothing for Autistic kids. The school had told me at one point they were thinking about having to expell my daughter for the behavior. Which was caused by her being a large classroom with too many students. after about 6 months they finally listen, and she is in a class room with one other autistic child, a teacher and the teacher aid. The change in her behavior was 360. It gets frustrating when they won't listen to me, her momma, who just happens to know her ten times better than anyone else in this world.

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  28. I work as a Speech Pathologist in Montana in the public schools.Although we are grossly understaffed and underfunded we seem to be doing better than some other places. No child has been left home for weeks without a placement, and children on the Autism spectrum are provided 40-60 minutes a week of speech and variable amounts of OT and PT as needed. We also have classrooms providing ABA. It is not perfect but it sure sounds good compared to some big city services. of course kids can always benefit from more intensive services but I see over 50 kids at 4 schools so we do our best. A lot of public schools are constrained by the lack of federal funding and wish they could do more for their students.

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  29. Also, consider someone like me who is minority in my last name only. I am white because my mother is white. I speak English, but I am on the autism spectrum. For many years, my spouse was adjusting to learning that her husband and children were all on the autism spectrum, so she did not involve herself into the equation. All this to say for many years, that the regional center took advantage of us, then the school district together with the regional center took advantage of us. Now, we have none or very little services. My son and daughter are homeschooled. And my wife, who is a school teacher, got more involved, but the time to appeal has passed. I don't know what can be done at this point. Looking back, we were taken advantage of and my attempts to receive help were ignored because I am minority, and I can't advocate for myself because of this condition I have.

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  30. This is SPOT ON ! I am a divorced white female, I have a job, doesn't pay well. I get child support but if you factor in my cost of daycare and meds ( half my pay) the support isn't enough. I get jerked around by the school, jerked around by social security, social services, boys and girls club etc.. I am constantly told that if I didn't have a job I would get more help. Here's the thing, I didn't need help till he hit puberty, he's always needed meds, Spec-ed Classes and an IEP. He has always had a neurologist and family doctor. I used to make really good money , he didn't have behavioral issues, he didn't do things totally out of character at school. Because of this I never sought a behavioral specialist, or therapy or a VooDoo doll. We were good ! Then it all went to hell. They act like since I never needed help , or asked for help, why now? They act like he's too old to help. Every program I call or e-mail has an excuse. They act like I dropped the ball, every minute that goes by is another minute he is just sliding by. I am on 4 waiting list that are 6mnths to a year long, 2 of them has been over a year. This is for a behavioral specialist. The school has lied in the last 4 IEP's promised us this and that and it never happens. No, I can't get a lawyer, I'm pretty close to losing my house. I send e-mails , make phone calls etc. I get no where. He is in 10th grade and we have been bull shitted for a year and a half, will this go on till they get him out of the school, push him through to get rid of us ?? What about the minority , limited English, believing what they are told, no one in their corner, it's frightening, and sad and the cold hard truth of it all. Something to think about, something to be thankful about for those of us that have a voice, even if it it's not heard at times. I'm also worried about those beaten down , those that are giving up, threw in the towel because they lost another job missing work, gave up because it was too hard. It is hard and it's not for the faint of heart. It shouldn't happen this way, but it does :(

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    Replies
    1. So sad for you. Keep trying. Hugs.

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  31. I'm horrified by all these stories. Hugs and prayers all around. Thankfully the town I live in has been up front and on time with services for my mildly autistic child. I wonder if it's because she was beating the crap out of all the kids in class every day. Haha. Her teachers have been amazing and have spoken to me on a personal level about how to advocate for my child's rights. Off the record of course but still...sounds like much more than what most do. I guess I will just count my blessings and hope this continues.

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  32. This autism thing in my home sure did teach me how to RAGE FOR MY SONS RIGHTS lol and be a PAIN IN THE ASS ALA CREME FROM HELL just to get done what needs to be done. Its unnatural to be like that, but when the going gets tough....
    the tough get going

    Wendy de Langen

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  33. This is the reason I'm so proud of Louisiana, sorta. After 17 years of State Medicaid fighting a class action suit for Medicaid eligible autistic kids, a federal judge got "fed" up and court ordered the state to pay for ABA therapy. I know lots of people don't have good results with ABA, but the therapy regiment isn't the issue. Poor children need the same access to therapy (any kind) as middle and wealthy income families. I go to many resource groups and meetings and so often there are low income families there desperately trying to help their child, but without the same educational and cultural opportunities. The world better wake up and smell the autism coffee or it's going to be the slaughter of the innocent like in Nazi Germany during Hitler's reign of terror. Want to have nightmares, just watch the documentary "Nazi medicine" on the history channel. And the hell of it, Nazi German learned about it from us. "Institutionalization became even more popular in 1883 when Sir Francis Galton's pseudo-science of eugenics took root in America. With the aim of "improving the stock of humanity," eugenics sought to separate members of society who were termed undesirable. Laws were passed that led to the forced institutionalization and sometimes sterilization of many people with disabilities well into the 1970s. This trend would eventually be overturned, as the focus turned to helping people with disabilities live within their communities.

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  34. I think no matter what your race, socioeconomic level or education level is your child will be left behind unless you educate yourself in Special Ed law and continually read to self-educate. I happened to have a Master's Degree and work for a university that offers special ed training and a school psychology program. It took hitting my head against a wall over and over to finally find the legal information that I needed to help my son. Unfortunately because we are "middle class" our son didn't qualify for state funded preschools where he might have been recognized as having autism. He was in private preschools which unfortunately don't have the same level of training to recognize what should have been obvious indicators. Our pediatrician never mentioned any possibility of autism. When my son was finally 4, I requested testing by the school district only to be ignored. 3 subsequent written requests were also ignored....when I finally became extremely legalistic armed with a knowledge of special ed law, the district finally allowed private testing at their expense. The diagnosis of autism was still ignored by the IEP team, not wanting to offer any services. I finally retained a Special Ed Atty and filed Due Process against the district. My son finally got the services that he should have received by law. We have started this year with questionable services again....so I may have to retain my atty again to "lawyer up" to continue the fight for my son.

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  35. In South Africa, where we live with our autistic son, even getting a diagnosis is difficult because there is this belief that it is bad to "label" your child. Even when you've begged the pediatric neurologist for some sort of diagnosis, there are absolutely no free services whatsoever. None. Nothing. And therapies cost an absolute fortune, so I would imagine it is only the lucky few whose parents can afford treatment, that receive it. Our son is lucky in that respect. So just hearing that you have things like IEP meetings and Autism co-ordinators, free ABA sessions etc, it sounds amazing.

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  36. This posting reminds me just how shitty it is at times. My daughter is 16, has severe autism and learning difficulties, yet wasn't diagnosed until 9 years old. Early intervention is key is all I see, yet when your not diagnosed until later on, what is the point. And when you finally do get the diagnosis, there is nothing guaranteed. It is shameful, soul destroying and just pretty damn hard that on top of everything else, us parents then have to become educated in everything special ed so that our children get what they need (hopefully). There is no clear path, no consistency and no guarantees of any help. As for the whole ethinic minority thing - can't say that I have come across that here in Wales (UK). I think most people experience the same hardships.

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