time bomb | Autism PDD

I also live in OH, Geauga County, more specifically.  And I will tell you that my son Hunter has gotten wonderful services here.  When we bought a house, we bought it in this county so he could continue getting special services.  The MRDD school my son went to was the Bessie Benner Metzenbaum Center in Chesterland.  It did not cost me anything extra for Hunter to get services during the school year, however during the summer it did.  After the first summer break when my son regressed horribly, I wrote letters to local churches and other aid services and was given financial help so Hunter could have summer therapies. 

So, if you live in OH, I suggest you move to Geauga County.  The price of living is higher, but the special education services are top notch.  The Metzenbaum Center is where you should go for EI, pre-school...they care for all school ages and even have a residential program on site.  

Kellie sorry its grating on you so bad. It must be hard too wanting to be near your family. Can you possibly stay with family til he gets a job there?

Remember too though no matter what is said dont believe it til its signed on the dotted line.... the grass isnt always greener on the other side.

Once you get into the suburbs the services do drop.  And stay out of Edina, they are very poor and bad with special ed services.  Lived there at one time.

Tammy

Actually you can still get those services in MInnesota.  You just have to be affiliated with the right doctors and clinics.  And alot of the services are based on income.  And if you live in an area outside of the twin cities or in the suburbs, the services do go down.

Tammy

hi, I am a mother who has an autistic son, he's 7 years old. We are evacuees from new orleans and you know what kind of change that was on an autistic child.  We relocated in an area that is not really what we wanted but we have to make due.  There isnt any help around here and we just don't really have anywhere to turn.  If anyone knows a great state or city to move in that can be help for my family please reply

I live in NY  -- on Long Island, in fact.  And what your mother was talking about is usually ONLY provided in EI.  Your son is already of preschool age, so services at home are rarer.  If you can prove your child needs it, some after school services can be provided (this was not true 13 years ago when my son was young, so that's an improvement) but mostly, the kids get their services in preschool.  At age 3.5, your son is already too old for EI.  His current services in Ohio are being provided under IDEA, so they are paid for, somehow, through the school district.  I have heard about the Ohio autism scholarship and I've envied it, but I really know nothing about it.  All I know is this simple rule.  It applies to New York and EVERYWHERE:

Your child will get services based on YOUR advocacy skills or the advocacy skills of a professional you are willing and able to pay for. 

That is true ALL THROUGH SCHOOL.  And in EVERY school district, no matter what state.  What I've observed is that parents who are highly educated and can actually understand the law themselves have the desire and money to PAY for an advocate to represent their child if the school district gets stubborn. THe parents who are less educated and are the last ones to be able to "get" the law and learn to properly advocate for their child themselves don't get an advocate because they can't afford one.  Some are able to access free advocacy, but usually that is only given AFTER the child has been screwed.  It's the same old story.  The rich get richer and the poor get poorer.

For anyone here who wants their child to get the best possible education he can get (tho NEVER use the word "best" with the schools), it really pays to spend a ton of time learning the laws in your state, bookmarking www.wrightslaw.com and saving up for an advocate, should you need one.  NO MATTER WHERE YOU LIVE.

 Western PA (PITTSBURGH AREA), has pretty good services. I'm sure their not the best all the time, but compared to what I here from some of you it feels like its great here.

  I was able to get Jace dxs within one month of making an appt. We had in home early intervention (ot, speech, developmental, pt) 2 weeks after calling for it. My son started wraparound (ABA) 6 weeks after dx. He was prescribed 15 hrs. a week in home, with the option of bumping up hrs. as much as we felt was good for him.

  Now at 3 yrs. old we go out of home for ot and speech, which is somewhat annoying, but they are good with him.

  He goes to a preschool 3 days a week with typical and special needs children. They are geared towards the special needs kids, so there is ot and speech and pt there too

  Jace received ssi one month after we applied. This is based on income.

We did not pay one dime for these services. Children with asd or any disability get medical assistance, regardless of income.

  Now all that said it is not a perfect system. We have had to fight for certain things. And we do fight so we get what he needs.

  Of course like some have said things can change quickly due to funding, but compared to the lack of what some of you get, its a great system.

  P.S. Having a good service coordinator or social worker helps alot too. Ours was able to get us a substantial amount of money thru a charity so we could put up fencing.

I am in NY and am receiving alot of homebased services from EI (everything we requested) and did not have to fight hard at all for them. My son will be 3 in march and although we will be staying in EI till august 31 we had the initial transition meeting with the CPSE and my EI coordinator.

While talking about the differences between EI and the school district we talked about the different services that will be available to him when he transitions. I said that at this point, I would want him in a typical preschool with a SEIT 2-3 days a week and that I would want ABA & speech at home and his OT at a sensory gym. This may be unusual but they seemed very open to this set up. The CPSE mentioned some of the typical preschools in the area that she felt were more open and experienced with children on the spectrum. They discussed alternate preschool options if typical preschool ended up not being a good fit.

Aidan will have to be reevaluated in January before he is accepted by the school district but they said they have no doubt with his present diagnosis that he will qualify.  They did not express any reluctance to the proposed set up. Now the hours of ABA given will be the point of negotiation but I am told that this area typically gives between 10-20 hours of home ABA in addition to preschool and speech without much hassle. The difference in speech will be that now my sessions are 45 minutes - when he transitions they will be 30 minute sessions.

From the information my therapists give me and from personal accounts from parents in this area, the services I will be requesting are typically given. Finally, we are getting something in return for our absurd taxes!

Jen

Kaviar -- You are right that I didn't mean that at all.  But I DID mean that the services a school aged child (5+) gets in any school district is in direct proportion to what that parent knows about his or her child's rights.  For example, I've run across TONS of parents who don't even know that the parent is a PART of the IEP team.  It used to be that a vote was taken to approve or disapprove services and the parents voted, whereas the classroom teacher was not allowed to vote.  Since IDEA 1997, they have stopped the voting procedure and substituted "consensus."  That is probably a better procedure, but it does not make totally CLEAR to parents who are new to the system that THEY are, to a great extent, in the driver's seat if they KNOW their child's legal rights.  BTW -- how many parents here know that your child's classroom teacher has no part in the consensus process?  That used to be obvious when the teacher was not allowed to vote.

There are lots of reason parents don't properly advocate for their children.  And most of that has nothing to do with intelligence.   Let me list the things I've seen over the years (as a Parent Member during IEP meeting as well as Pres. of our local SEPTO and now a moderator at our local autism group's support group) that interfere with children getting proper services (BTW, EI is easier than preschool and preschool is easier than k thru 21.  This is mainly due to funding issues but also because by kindergarten, the provider of services and the group that DETERMINES services is the same, so there's always an internal conflict of interest that generally does not exist prior to kindergarten).

HERE ARE THE THINGS THAT CAN INTERFERE WITH GETTING GOOD SERVICES:

1.   The parents do not locate their state's regulation of IDEA and MEMORIZE the parts that pertain to their child.

2.   The parents are timid.  They think, "who am I to question the experts?"  The fact is, each of us is the ultimate expert in our own child and the other "experts" would do well to learn from us. A corollary is that some parents worry about whether getting something for THEIR child will hurt another person's child. Well, it's that other parent's job to advocate for HER child, not yours.

3.   The parents do not have good negotiating skills.  Either they cannot debate properly or they think that belligerence = competence.  It does not. ANd poisoning a relationship with belligerence will only bode very poorly for your child.

4.  The parents fail to join groups that can help them understand what is available to them and their kids and/or fail to search out information (as on the Internet or by reading countless books.

5.  The parents fail to ask for parent training.

6.  The parents fail to "keep their friends close and their enemies closer" by getting to know the players in the school.

7.  The parents are loathe to use all the tricks at their disposal to make sure people in the District understand that they are paying attention.  AMong these tricks is to mail letters of compliment to the SUPERVISORS of the people who do a good job, copying everyone up through the Superintendent.

8.  The parents do not keep good records.  This means putting EVERYTHING in writing and expecting a written answer.  Plus, keeping these things in a chronological file.  The parents also fail to request seeing their child's ENTIRE educational file at school and ask for copies of everything of interest.

9.  The parents fail to read and fully understand their child's IEP every time it changes and make SURE the teacher has a copy and understands it, too. Beyond that, the parent MUST make sure that the IEP is being followed by everyone. Some parents think that getting an IEP in place is the end of their job. In fact, it's just the beginning.

10.  The parents want to be "nice."  They don't want to "tell on" people who are not doing their jobs.  They don't want to make waves.  They would never consider going straight to the Superintendent and saying, "I'm a taxpayer here and my taxes are being wasted on this particular incompetence."

11.  The parents fail to join SEPTO/SEPTA or start one in their school district.  They also fail to attend School Board meetings and vote for sympathetic school board members.

12.  The parents who KNOW they are failing at the above fail to find the money to pay an advocate or lawyer to do it for them. 

13.  The parents DO ask questions of people but never internalize the answers so they come back to the knowlegable people, asking the same questions over and over again over the years, making the very people who COULD help them not want to help them because, clearly, the parents would rather lean on someone else than try to figure this out for themselves. 

14.  Because parents who are poorer generally have to work more hours outside the home and generally cannot afford things like babysitting for their children while they attend classes or meetings, and they CERTAINLY cannot afford an advocate to the tune of 0+ per IEP meeting, THEY are the ones left on the short end of the stick.  Not because they are stupid but because they don't have the money to make doing the first 12 things feasible and they can't afford to pay someone else to do it for them.  These parents often fail to get the best IEP's for their children not because they are stupid but because getting the best possible services for our children takes time, time, time.  Which is often in even shorter supply than money.

BTW -- I have never been denied anything I've asked for from our school district in all the 13 years my son has been receiving services. However, I am one of the very lucky ones whose husband makes enough money so that I can stay home and spend my time learning the law, going to workshops, volunteering at the district, etc.  We also stopped at one child so that we COULD give this one child ALL of our time, effort and money.  I am not saying that it isn't a good idea to have more than one. Often, I've regretted stopping at one. But it DOES give me more time and money to help my son.

I would like to repeat that parents who do not advocate properly for their children are NOT necessarily lazy or stupid.  But the fact remains that, especially as a child gets older, the help the child gets is in direct proportion to what the parent knows and is able to get the District to agree to through good negotiation skills or legal help. 

I would also like to say that the majority of the parents I've known over the years really have tried to do make sure they do know the law and they do negotiate properly for their child.  However, there are parents who continually make the same mistakes and then are surprised when their child is not getting the things another child is getting. If you want your child to get his needs met, YOU have to watch carefully and act when things go awry.

Parents!

The above is tremendously valuable advice.  Copy it into your paper files or e-files.  KEEP IT for when your kids start Kindergarten.    We are very fortunate to have all of this insider info/advice/experience laid out for us by someone who could otherwise charge a great deal of $$ for it. 

Thank you, Tzoya.

The laws are bound to be totally different in Australia.  Also, the laws may be different now than by school age.  It's possible that where you live, there ARE no laws.  I don't know.  My experience and what I wrote in the post here are based on experience in the US (NY in particular).  I guess I'd go to the administrators of Sharlet's current program and start asking there.  IF there are other spec. ed. kids in your area (not necessarily ASD kids), you might be able to start a support group of your own.  The most valuable support group I ever belonged to consisted of mothers who had children with all kinds of needs. We learned from each other and our kids grew up together.  I held the meeting in the evenings at my house, once a month for 10 years.  My DH took our son out for the evening so that we all could be alone to say whatever we wanted to say.  We are now permanent friends and the group had its last meeting last June, because our kids are all teens now and we will always be in touch with one another, so we no longer really need a formal group.  But you and your daughter are just at the beginning of this journey.  I can't recommend enough starting your own group.

Allegra --  I don't want you or anyone else to think that they should regret having other kids.  Most families DO have other kids. I was just pointing out the fact that I CAN do a lot of research, etc., because I have only the one. 

About support groups. I would DEFINITELY join the ABA support group even if you can't access an ABA service provider. You will learn A LOT and won't be socially isolated.  Get to know the other moms of kids in Sharlet's class. Make play dates with them.  I've learned the MOST from other moms.  We are the only ones with the incentive to find out what REALLY works and how to access it.  If you wore a size medium and the ONLY dresses available were size large, you wouldn't go around naked, would you?  You'd buy a size large and MAKE it fit.  Reach out to the people who are dealing with issues close to those you deal with.  You won't feel so all alone.  And they may KNOW how to get the best help in spec. ed. in Australia.

kaviar -

Here's a website that will give you a great idea of what the real estate prices are like in the towns of Long Island:

http://www.mlslirealtor.com/unisearch.cfm

Here is a cool Long Island site, too:

http://elija.org/

We live on Long Island, and I have to say that we have been beyond pleased with the services so far.  Be sure you are familiar with what your potential school district offers.  The school-age offerings vary tremendously between districts.  We have found good support in various parent support groups here, as well.  Long Island isn't Shangri-la, but it does have a lot to offer regarding autism.

Moving for the potentially better services is worth considering, but even better is that you have family here.  And willing BABYSITTERS !!!!!  The support and love of your family is reason enough to move, IMO.

I'd be happy to talk with you if you'd like to e-mail.

WOW!!!!   Tzoya, that is post was wonderful!!!!!   I hope that parents really really really listen to what you insisted has to be done. 

I work for the school system, I have to remember that sometimes when I know parents could get more than what is being offered.  I am going to print out what you posted and keep it for my reference when talking with parents who do need some direction.

When you were speaking of parents being educated, I believe you were referring to parents educating THEMSELVES on all the things that pretain to ASD and the public education system.  Not about educated parents vs. uneducated parents or upper class vs. middle class vs lower class. 

I have found out in the past 10 years of my career, which includes teaching, working for the EI in the state department as a coordintor, and a private school for children on the ASD, that it seems to be the higher the SES the more a parent becomes involved.  I don't know why this is so.  But there is no reason why parents of all classes and education levels and neighborhoods, and school districts shouldn't come together and learn from each other and shouldn't educate themselves on behalf of their child who NEEDS their advocacy.  I sometimes wish that the school system coordinators would hold some special ed teachers and school administrators more accountable, but that doesn't happen.  I wish that parents would be afforded a state appointed advocate or something like that when their child is DX with any disability.  But that is utopia. 

Not everyone can afford an advocate.  If I was in the posistion of all you parents on this board, I wouldn't be able to right now either.  Nor would I be able to provide in home therapy.  That is why it is so important to learn all you can about ASD and the appropriate interventions and your parent rights, so you can go in an IEP meeting and call the shots and tell the school district what you expect.  If you don't know, how you can you tell them?

I know this is just more of what Tzoya was saying, and she is surely more knowledgeable about this than me.  But i had to throw my 2 cents in and encourage EVERY parent to educate themselves on special education issues.  And I wanted to point out that your state department of education website will have an entire section about special education and everything that pretains to your own state about 3-21 services.  Each state should also have a website for the Early Intervention birth -2 part.

"When you were speaking of parents being educated, I believe you were referring to parents educating THEMSELVES on all the things that pretain to ASD and the public education system.  Not about educated parents vs. uneducated parents or upper class vs. middle class vs lower class. "

Wray -- You are TOTALLY right. I am speaking about parents educating themselves in autism.  That can happen by attending support groups, coming to boards like this (even poor parents can access the Internet for free at the public library), taking advantage of free seminars and workshops, taking books out from the library and reading, etc.  This is VITAL.  I happen to live in an area where there is a very diverse population with most people in this area being blue collar working class with some being very, very poor and a small minority being well educated and of greater means.  I know some people who never know from month to month if they will have the rent, but they can recite special ed. law, chapter and verse.  I know one woman with a bachelor's degree who has asked me the exact same question every single year for the past ten years right before her son's annual IEP meeting.  That is making me MAD. It's totally possible for her to find this all out on her own. I've HANDED her copies of our state's regulation of IDEA.  She is simply too intellectually lazy to figure this out on her own.  It is often true, however, that parents who are poor are less likely to be able to advocate for their children.  I've been able to see, up close and personal, what being truly poor is really like and, believe me, these parents don't have a spare minute to "educate" themselves.  They are the ones who don't volunteer at school because they are often working 2 poorly paid jobs.  They don't show up at Parent's Night because they are often single parents with no one to watch the kids.  I've seen many of these people not be able to read themselves. Maybe they had dyslexia that was never addressed in school.  Maybe their own poor parents couldn't afford glasses, so they did poorly in school.  The fact is that doing poorly in school portends poverty, so there are very few poor parents who are ABLE to educate themselves.  I see this every single day in the school district I live in.  It kills me to see, but there is only so much I can to do to help. 

What galls me is the parents who really ARE capable but who expect everyone else to take care of things.  Many just sit back and expect the schools to simply offer them everything.  That is NOT going to happen.  It's incumbent on us parents to KNOW what our children have a right to, learn what it takes to get those services, and negotiate them at each annual IEP meeting. 

All of the above is MHO from 13 years of observation and of learning, myself. 

Here in WI there are several agencies that will teach self-advocacy and also send free advocates with you if you can't afford one.  Of course it doesn't seem like the school district really imparts this information willingly.  Also, I found some of my best information on our Department of Public Instruction Website. Also very helpfull links.  We also have a CESA advisor for each school district.  This person will give you free advise by either phone or e-mail, will review all of you info and give you all the info you need.  They will not however come with you to the IEP. 

As for services in WI.  I hear all of the time how great they are.  Well, I am still looking for those great services.  We do have really good EI services, but once the kids get into school, things really change.   Adam was not dx until he was 7, and we have paid for all services out of pocket.  It is a fight for everything.  Just because you have a med dx of a ASD, the school does not have to accept that as an eductional dx.  The child has to be VERY far behind before they will be given Spec Ed services.  Don't even think about living in Milwaukee.  The public shcool system has been sued many times for lack of services.  Our district which has been rated as one of the best in the state (the reason we moved), does not have an ASD consultant or ANY ASD classes.  In my  sons school.  He is in 6th grade and the only child dx with an ASD in his grade.  There is one other child in 2nd grade. So my first priority has been education of the teachers for what my son needs.  Three years after moving here I am finally getting somewhere.             

I didn't even look at the dates.  How embarrassing!

Glad to hear it all worked out for you.

You are right that I didn't mean that at all.