Need to make a case/proof.. HELP
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I need to make a case to get my daughter increased ABA hours through Early Intervention. No matter what I say, I am constantly fed the "burn out" argument. My daughter is 22 mos old - Could other ppl on this forum who started ABA with their children tell me the AGE and HOURS of ABA for their kids? There are a lot of ppl with older children - I need to give proof of kids that are my daughter;s age who receive ABA thru the State or pvt or whatever... Please please help!! At 22 mos, she gets 5 hrs a week and another 1.5 of DI (which is just play time). In that 5 hrs, it is not really ABA - more of a structured play! I'm sorry I can't help you! My son started EI around age 2. We got 1 hour of speech and 1 hour of OT per week in our home. The therapists were excellent, and I hired my speech therapist for extra speech on the side. There is no way we could afford ABA and I don't know of anyone who got ABA through the schools where I live, and if there is anyone who did, I highly doubt it was paid for by the schools at 22 months. My state is in the bottom half of states for funding education, and likely in the bottom 20% overall. There are many folks here who have done or are doing ABA with there kids...Someone will pop on and help. Best wishes! Parker was getting 20 hrs/week of inhome ABA at 21months old, by 23months he was up to 30hrs/week. However, this is not something that I am reccomending. I honesly don't think it is the only way to go! It was very hard on him & us! When he was 30months, he starting to show signs of aggression & bordom when the tutors came to our home, it was as if the program was starting to have a reverse effect on him. That is when we decided to change things up & enrolled him in a Structured Teaching preschool for ASD chilren 24-36months. He was/is still getting ABA, just not nearly as much. He has done much better in a classroom setting with other children. I am not sure if this helps you one bit, but I just wanted to share our experiance with so many hrs of ABA. Our state is 46 on the list of provided therapies Sarah needed at least 30 hours of ABA because she was so tuned out..the minute we didnt engage her she was off alone in her own world again and it took major energy to get her back with us.. Wish I could help you Rita..I do think you could fill in the gaps the school wont do yourself if your dh could help you too..it is really common sense therapy~I feel anyone could do it.. you know your child better than any therapists or specialist out there and you will get things out of her they cant just because you are her mommy. They are many on this board that have passed Sarah in spades without ABA so it tells me it is not absolute for every child nor is it a hopeless if you dont do it like I did..I think the key is just trying to do the best you can teaching her what she needs to know and lots of praise and rewards all the while. Cant help with the schools...I have known many parents that have fought for ABA here in Texas and never got it.. so I never bothered fighting for it..I didnt have the time to when she needed so much help right then and there and all our energies went into helping her. I could of got on waiting lists for college kids to do ABA but the wait was up to a year..didnt have time to wait. School wanted to do 15 min. of speech a week..she needed hours not minutes..I dont rely on the schools at all.. Quality is upmost important right now and not quanity:) Good luck! Rita... I know that they say ABA is the best. But y don't u try out the 5 hrs they recommended along with other services like OT and SP for a couple of months and then if u see no improvemnt, then u can request more ABA or any other service... Just my two cents in... This is what I am doing. I am trying it out "their" way, and then I can decide..Thanks everyone...she has been in therapy for the last 2 months and like Shelley pointed out with Sarah, my daughter seems to be just like her in the "disenagement" arena - If we don't play wit her ALL the time, she is very happy to go off on her own and do something meaningless or just wander abt in the house! She NEEDS structure and even with that I see that she wants to get out all the time - we get a lot of head throwing/banging, crying and screaming while trying to get her to play with us!! EI is just not ready to increase hrs - my therapist is really good and my daughter likes her (DD will give her smiles and flying kisses!) so I dont really want to get on their bad side but I honestly think that more hrs will bring more structure. Shelley - I want to do ABA myself but I am going to day something that will make me sound so needy and pathetic and so not fir to be a mom but I start off and then get so depressed - I am still trying to get over the dx - I can't....I am not there yet - I want to be Shelley and Cindy and Foxl and Fred and all u WONDERFUL parents who are doing SO much for their children but I am not there yet mentally & emotionally. But MY inability should'nt make my daughter suffer. Dh is very supportive - so thats no problem but he really doesnt know how to engage her either. I think with ABA from therapists - I can cary it forward in the day.... I want atleats 15 hrs but that is IMPOSSIBLE so I want to start pleading for 10 which is still an impossibility.... I know some kids dont need as much but I suspect my daughter has a LOT of issues.... she is FAAAAAAAAAAAAR behind. Sheeley - she is close to 2 yrs and no, she doesnt recognize alphabets/numbers like Sarah did - she has NO words ( not even doggie or da for dgggie), I told u guys what her eval scores from 2 days ago were - she is at a 10 mos level. I ordrered the ABA manual and Catherine Maurice's book but the 'look at me' drills failed miserably.... didnt work with pretzels/M&Ms..nada! Someone give me another way to "BEGIN" ABA from step 1!!! I fear she is menatlly challenged and it feels like a death sentence ........ Rita, often the case can be presented either by what will be gained or what will be lost. I would put forward a letter in writing that notifies the powers that be of your concerns about not getting enough hours. I would request a psychometric evalution if one hasn't been done. The core deficits of ASD make typical learning and deduction almost impossible. By not giving her the opportunity to learn in a proven method for ASD kids they are jeopardizing her chances of potential. There is no other formal teaching method than ABA that focusses on overcoming the obstacles in a measurable way. It would be the same as saying 5 hrs a week of normal interaction is sufficient for a normal child. I would address the "burnout" as something that may not even occur and if it looks like it's occuring you can address it that time. They can use the same argument for not being a doctor or even sending children to school. If you can get a professional opinion that also supports more hours that may be helpful. 34 CFR § 300.26(a)(3) (emphasis added). Most experts will state that many if not all autistic children need to begin with adult-directed ABA until ready for more naturalistic learning paradigms. Inappropriate methods may not reach the autistic child; most “normal” or even special ed methods are not reasonably calculated to provide the child with an educational benefit. When an autistic child has no motivation to please parent or teacher, the child “lacks the fuel that drives the social ‘engine’ that powers much of early learning.” (Siegel at 91). It is generally agreed that many ASD children need intensive and specialized early instruction because they: – lack intrinsic, internal motivation/structure for learning; do not have social motivation to participate, behave, belong – don’t learn by observation – don’t learn by imitation – don’t engage in joint attention – can’t communicate through normal means (i.e., speech) – must explicitly be taught attention, focus and attending skills – must explicitly taught new skills (i.e., adaptive life skills), with a high degree of and repetition, each task broken down to its parts –suffer from sensory processing difficulties – revert to “stimming” (mental downtime, nonlearning) when not directly engaged – may suffer from severe behavior problems that impede participation – may endanger themselves or others (as with incessant chewers and wanderers, and those with self-injurious or violent tendencies) National Academy of Sciences: Effective programming requires a minimum of 25 hours per week of active engagement in intensive programming, 12 months a year. Effective intervention must be “intensive”; intensity of education is associated with amount of progress; hours of participation do not necessarily translate to hours of time engaged in intervention;“intensity” is best thought of as “large numbers of functional, developmentally relevant and high-interest opportunities to respond actively”; initial skill development will be accomplished from individual instruction. In my sons case and also with four other boys I know ABA did make adifference. All four received not less than 25hours of ABA 1:1 to start and many by 4.6 to 5 had between 30-40 hours a week. Remember the hours are all not at home, some are allocated for school setting some for outside activity (play dates, Gym class, music, other community settings that gets kids to generalise what they have learned) This is where a good supervisor and program coordinator comes in handy. ABA is data driven so it is easy for me to see where my son's core deficit areas are. Every child is different, that is why some children do not seem to need ABA . My sons deficits were in the area of language development( he struggles with this). He also has anti learning behaviors and ABA was great with that. His biggest area of strength has been in the social arena. he has always sought out people to interact. He loves to play, he loves to go out, he loves to eat at restaurants. ABA has taught him appropriate play skills,joint attention,conversational skills. He currently attends a typical pre-K program with a 1:1 shadow and he has excellent behavior. He has a ton of friends at this preschool but he is at least 1 yr behind on his language skills. It is rather daunting as the language acquisition of NT kids is incredible at this age. I do not want that gap to get bigger and bigger. he has a lot more programs to master and I am hopeful that by end of 1st grade or 2nd we too will be done with ABA . One of the boys that I know who had similar deficits like my son,( one month older) had a better supervisor and had more hours 40hrs (I do not know how they did it ) He currently is fading out is ABA program because he is doing well in all settings. If you know in your heart that your child needs more hours than you are probably right. 5 hours would have never cut it for my child. We lso have private speech as well. The more programs you need=more hours. More programs=more IEP goals. I have an evaluation which pretty much addresses my sons area of need. If you need the breakdown I will be more than happy to share them with you. Kathy Good Luck. Rita, I also wanted to tell you I have a dd who is difficult to engage and keep focused and I hiope you can find the therapeutic hours your dd needs. I also think they give out 5 hours more to do with budgetting and very little to do with the actual needs of the child. You can feed more ppl crackers than you can steak... like feeding starving ppl crackers and many won't do more than grumble amongst themselves some don't even know that they aren't getting enough or some fear they'll lose their little bit of crackers they get. And those that do demand more ... they get the you'll get fat argument or you should be grateful for what you get. And, if you don't holler for steak you won't get it. I love the steak vs crackers analogy!! :) Ok so I am ready to draft a letter... the one thing that is discouraging me from "battling" these folks is that dd really likes the therapist and somewhere I think that if I get on her bad side, well, I won't get effective therapy and that would be counterproductive. So I want to be tactful - in that I need my hrs increased but will afford them the luxury of step up increase with review every month or so?? Ins hort, how many hrs should I ask for? I KNOW that if I say "15", they will ust say NO! Instead should I INSIST on 10?? Then I will try and get another hr or so from the DI plus I have 2 hrs of Gymboree (I shadow everything dd does there which isn't anything but atleast I enforce the circle time tho she just sits and stares at the teacher!... so in all I will have 15 hrs - 10 hrs ABA, 3 hrs DI and 2 hrs gymboree. what say?? You're not battling... you're only working like them for your dd's health and letting them know things about your dd that they should know so they can help her. Write as if you're on the same team. You write the letter assuming they are only interested in your dd's health. When health is an issue money should not be and if they bring up cost they are siding with the bank and not your dd and call them on it. ABA will give her the basic skills. This is going to teach her attending and compliance. You can't just arbritrarily come up with numbers. Does your dd have constructive teaching in the morning? afternoon? I would expect at least 2 hrs am and 2 hrs pm. I would ask for 25 hours per week (2x2.5 hrs = 5 hours a day) and shoot for 20. Don't worry about them this is their job... no one will lose sleep if they cut your dd's hours other than you. They have a secret stash of resources for ppl who push but they pretend they're broke until they see they're liable. ANYHOW, I'm certain their interests are in line with your's in reaching your dd's potential by providing her with the intensive therapy she requires so she can start to learn how to learn. Please, PLEASE, PLEASE do not be so hard on yourself! My son's first "meaningful" word, "more" (meaning we knew that he knew what it meant and understood what he was saying), came after age two. His first "word" was "circle". I wasn't sure he knew what that meant, so we count "more" which he said AFTER "circle" as his first "real word". He said "Mommy" for the first time at 3 1/2. He started putting words together spontaneously (after much prompting) at 4 1/2...He is now 5 years 3 1/2 months. This is a MARATHON, not a sprint. Believe me, I understand the need for early intervention and the feelings of desperation that go with it. But the best way to get your child what he or she needs is to educate yourself, remain calm, learn the law, talk to other parents, portray the image of being a "team player" (even if you don't feel like one), and take care of you! You are early in your journey...Love your child and do the best that you can. Don't sweat the small stuff, and don't assume it's the end of the world if you can't get the ABA that you want right away. Not many people can unless they can afford it out of pocket. Over time you will learn what it takes to get what you want for your child educationally, and you will get alot, if not all, that you shoot for. Some day you'll be helping other parents starting this journey...Now BREATHE..................... Rita, YOU are way too hard on yourself.. I must come off terrible with all my preaching of ABA all the time Sarah at 3 years old was eval. to be at a 8 mos. level! You are already ahead of most of us that didnt get out diagnoses till this late..you are doing so much with her and reading your posts I feel exactly what you are going through..believe me WE all have been in your shoes at the beginning..I couldnt even go one day for over 6 months after she got diagnosed without bawling my eyes out at least 6x a day so I know how emotionally draining it is and beating yourself up. Each minute I didnt give her attention I felt like crap...and each hour that went by and I still wasnt actively engageing her I thought I was the most horrible person in life...like Andrewsmom stated it is a marathon not a race and slow and steady keeps your sanity! Do what you can...take a break..come back when you get more strength..take a break...it is how we all get by with a child with autism..I was told to engage her 24/7 but no way anyone can do this! I placed the thought of her talking to me one day and made a mental picture of it and THAT is what motivated me...esp. when I couldnt think I could do another day of trying to engage a child that didnt even know if I was here or gone and didnt care..I understand you:) Dont let my words make you feel any less of a mom or anybody else that reads my words...I only have my story to tell and it is all I can express..is my experience to try to motivate not guilt you:) I remember being in your shoes looking for advice on other boards and I got so depressed because all I read was so hopeless...lets face it.. some of the stories out there are pretty dreary when your child just got diagnosed it is scary stuff to worry that your baby may be one of those kids that never progress...I searched like crazy for positive stories because I was sinking fast and needed something to hold on to..This is why I rant about Sarah doing ABA and how well she is now...because I want to give hope and let people know that things change~which is something they need to hear! Your child is going to improve with or without ABA ..it is a fact~how could she not? You are doing everything you can and she is already starting to progress since you got on this board:) I have been friends with other moms of girls like me and we have followed each others progress..some did ABA... some did not do even one hour of it..guess what ..they are doing great!! At one time all of our girls were just like your dd.. and they are all talking now~some too much..in fact mine talks the least amount of all and I am the one that did full time ABA and they didnt; so please dont go crazy with worry...get on the floor with her and get to know her and find what makes her tick:) I will shut up now Thanks again everyone.... I am going to ask for 20 hrs hoping that they can atleast giv me 15! And then will hope for more... Once I can see what ABA is and what it is that I need to do, I can take on the addtional hrs. Will also read thru all of Littlebopeep's posts on implementing RDI. I think I am going to take a break for a couple of days - my constant negativity is affecting everyone....I realized how overwhelmed I feel - I was sitting in the shower with water running down my cheeks and I wasn;t even blinking....when I got out my eyes were bloodshot!! I cant do this...it is not helping my daughter.I really dont want to call this grieving bec that would imply something so severe but the fact is I feel "grief" - abt losing out on a normal baby/toddler/first words/play activitiies/.... when we play with her, it is NOT fun - it is forced and it takes away all the warm feelings....she has become an excercise to complete.... I need some time to mourn this personal loss.......... doesntmake sense does it? Since my son's days in preschool preceded the ABA revolution, I'm no expert in the area. However, I've been told by others that the recommendations in the book Educating Young Children with Autism have been successfully used in Impartial Hearings to support 40 hours a week of ABA. These days, the "gold standard" has been generally accepted to be 25 hours, since plenty of parents want those extra 15 hours to be spent in other therapies or social activities. If it were me, I'd join the Yahoo group abaparents and post this same question there. Those are the experts. Didn't work...................................mentioned it ( did not hand in the letter) and all I got was - we really don't think it necessary! now what??? no, no, Rita, if you are to get ANYTHING, it must be requested in WRITING. But I do like Lalloo's approach -- let them give you their amount and see what happens. And remember, our kids develop in SPURTS, not slow-and-steady! Tuhina never has had ABA or RDI. Remember the guy who worte the article in Pediatrics about symptoms, IQ and improvement? The implication being, these kids GET BETTER. Don't freak out. T's friend the OT told me, whatever the schools will do for her, she WILL BE FINE. And I think she is right. Kids catch up. Heck my husband did not learn to read until age 9! Well ... maybe he's NOT the best example ... LOL ... but he really IS doing okay! Don't be so hard on yourself Rita ... really. ((((hugs)))) Nick gets NO ABA (they don't offer it, and really don't even know what it is around here!) He is 5 and doesn't recognize any (not one) letter or number. I no longer feel overwhelmed (well, not alot), but I do feel a lot of sadness. I'm hoping for a "spurt" once he is in kindergarten and in the dedicated autism classroom. I can empathize, rita, truly. My son was just diagnosed, and I am positively overwhelmed by everything that needs to be done for him. I've heard about getting forty hours a week ABA, and I'm wondering how in the heck we're going to get it, too. I doubt very much that he will get that through the school district, as he also needs speech therapy and probably OT as well...kid can't jump or kick a ball or use a spoon! I know there is no way I can afford to hire anyone to do ABA privately, even long enough to teach me to do it so I can continue...our budget is so tight that it squeaks! LOL All I can say is, try to get the most you can, and try not to worry too much about it. I know it is hard (I am struggling with some of the same feelings right now that you are), but we've just got to keep our chins up and keep plugging away the best we can. We love our kiddos, and we'll do whatever we can for them. That's gotta count for something. Mega hugs to you, rita! Hang in there! |
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