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I read with great interest today’s big autism news story, “Study: Autism Detected Later In Minority Children” and 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…
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.
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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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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.
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.
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.
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.
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...
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?
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.
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.
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
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.
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.
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.