Teresa
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Teresa
| Fri, 05-19-2006 - 8:12am |
I went to an ascend support group meeting this week and one of the topics that got discussed was school districts.
| Fri, 05-19-2006 - 8:12am |
I went to an ascend support group meeting this week and one of the topics that got discussed was school districts.
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Thanks for passing that info on. I was actually going to post a question to you about Springfield school district and what you have heard about that. We still haven't had any offers on our house yet and Havertown is very expensive so unless we buy a fixer upper that might not be an option anymore. To be honest it would be hard to go from the house we have now to a fixer upper because our house is only 5 years old so it we haven't had to put too much money into it. I have thought about buying in Drexel Hill and sending him to Aronomink Elementary and hopefully by the time he gets to high school sending him to a private school then if he could do it. Jake is doing really well at school but it ends next week and the IU will be closing for a couple of weeks during the summer so we are planning on paying his old therapists from E.I to do some sessions with him then. I can see that what he gets from the IU will not be enough therapy for him so I'm going to look into what our insurance will provide. Have you heard of any good agencies in Delaware county that provide wraparound services? I need an aide for Jake for school in the fall and I'm hoping I will be able to get a TSS by then. I can't wait to sell this house and get everything sorted out for September for him. Cleaning my house everday is getting really old!(LOL)I also need a bit of advice about Ella.To be honest there have been times I've thought she was on the spectrum but the majority of the time I think her problems are more sensory related. The reason I was so worried last week was because her OT kind of hinted that she thought something more was going on with her. Of course I want to do the right thing so I called CHOP and they are trying to get her in quickly because of Jakes history. When I talked to the doctor on the phone she said that even if they were not 100% sure she was autistic they would give her a diagnosis because she would get more services and then wait and see if they were wrong. That kind of alarmed me because with Jake I was so sure but with her I don't get the same feeling about her.I'm not sure I agree with giving a diagnosis of autism if your kind of sure! I'm not denying she has some issues mild motor planning, picky eater,tantrums and unclear speech but no obsessions and she plays with toys the way she should and she's very social.One of Jakes old therapists still comes to see him and she runs a preschool for autistic children. She told me Ella's OT called her with her concerns about Ella. Jakes old therapist says there is no way that Ella is autistic but she thinks she has sensory issues and she feels that if a doctor were to diagnose Ella she would consider it malpractice! I really don't know what to do about taking her to CHOP. What would you do? I bet your sorry you posted now(LOL)How have you and the kids been doing? Are you getting as much rain as we have been in Allentown? I'm starting to get cabin fever(LOL)What are your plans for the summer with Bobby? Well, talk to you soon!
Teresa
Dear Teresa,
I would take her in to be evaled. And I would even take an autism diagnosis to get services needed if your school district will not give them otherwise. A spectrum child CAN be very social and without obsessions, mine is. Very few people can tell unless he is having an "autistic" moment. Renee has written over and over about how she and her husband refused services for her second son because he was so different from her first daughter, and how she regrets it now.
An autism dx can be changed later. A child who starts off on the spectrum might go off the spectrum, or just be doing so well that they don't need an IEP or dx on file. Getting needed services can be very, very hard with our borderline children, and if they don't get what they need, they suffer in the long run. And Jake's old therapist is NOT an evaluator, right? I think people must be careful about what they say, evaluations need to be carefully done by experienced evaluators, not guessed at. Paula's daughter has been dx'ed "at risk for Asperger's" and has many services, which have been helping her to be successful. I just feel that being overcautious in terms of getting help and then letting the help go when NOT needed is so much the better way to go, KWIM?
Ella is very young yet, right? Social whe young can turn into social difficulties later with a mild spectrum child, because when young, the social challenges are small. Tantrums are acceptable socially in younger child, but not as they age. Imagine if the behavior you see now doesn't really improve by age 6 or 8. Right there is where we really see the autism in our now-8-year-old son, and he has been in years of therapy. He still struggles with his huge overreactions in a way that is not appropriate for his age, BUT he is improving every day.
We didn't have an autism dx for Malcolm when he was little, but we managed to get lots of services anyways with speech and langauge delay category. I don't know how your school district is where you are, you might be able to get OT, speech, etc, without autism dx. We still don't have autism dx with the school system, because we don't need it currently. But I would say go for the evals, get the services started as soon as you can and see if she catches up.
Good luck, such a lot on your plate. I can't even imagine thinking about Summer as a time to sell your house, find another (fixer-upper?), move, change school districts and get everything ready and set up by Fall, gaaawwk.
yours,
Sara
ilovemalcolm
"Renee has written over and over about how she and her husband refused services for her second son because he was so different from her first daughter, and how she regrets it now."
How did you know that was just what I was about to do. You have saved my fingers!
Theresa, This is something I feel strongly about now in hindsight. I don't think it would be malpractice if they were 100%. They could always use PDD-NOS or autism spectrum disorder for a child who exhibits some but not all of the symptoms of autism. They could also give her a provisional autism diagnosis. It is just really hard to tell at this age and I think it is more responsible to er on the side of getting the child appropriate treatment then to er on the side of hoping there is nothing more.
It isn't like they would diagnose her if they though absolutely not, no she isn't autistic. She would have to have some symptoms and concerns for them to justify it.
Dave got a PDD-NOS diagnosis a couple years ago. It helped us gain services for him too. He was unclear as well and we didn't know for sure. He had a lot of great strengths but some concerns. NOw he is doing great and we have removed his IEP and if he does well through the first half of 1st grade I will officially get his diagnosis removed. I don't even tell anyone anymore that he has any diagnosis other than SID. Even then most of the time I just say he is a spirited individual. He has some quirks but really he is able to manage and function fine.
Renee (guess you didn't save my fingers after all. It is something I am pationate about since I screwed up so bad.)
Teresa,
I am not comfortable with therapists calling each other to discuss your children and then gang up on you about them
None of their arguements negate the logic those CHOP people presented: That a DX will help her to receive services. This has definitely been my experience with Siobhan's "At risk for Asperger's" "DX". In some ways the "at risk" category was a godsend, because it implies that if something is done; the risk can be averted, and probably put the fear of God in the school, that if she ended up with as Aspie DX I could have sued them for not averting that "risk"! LOL I only thought of that recently.
Bottom line: It's not their call. It's yours. You don't have to act on a diagnosis or accept an diagnosis if you don't believe it. I walked out on a neurologist who tried to DX Peter as PDD after five minutes. Actually, I regret that now. I am still fighting the school to have him recognised as a Autie, and not ADHD.
Last thought (really this time): What if it turns out that Ella does have a mild PDD? Will *they* be guilty of malpractice? Technically; no, because they can't diagnose, but ethically; yes. They will be and should be guilty of malpractice.
OK done ranting, but that is my 2¢
-Paula
visit my blog at www.onesickmother.com
Teresa
(((((((Teresa))))))))) We were away this weekend or I would have repsonded sooner.
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Teresa,
I, too, have a little one that seems to be on the spectrum. My older son is 3.75 and goes to the Autism Support class up in Coatesville 4 days a week. My younger son is 21 months and completely non verbal. I always took comfort in how different in personality he was from my older son and hoped that he was NT, but in the past few months I've watched him slowly begin to have sensory issues (just like my older son) and I've watched him become more and more like his big brother. It's been scary.
My younger son currently gets special instruction 2x week and speech therapy 1x week. We just had his IFSP meeting and we are going to add OT. My coordinator (this awesome lady named Sonia) also told me about the CATCH (Child Autism Team Check) that will fit my younger guy within the next two months and evaluate him. It's a program that Chester County has with CHOP (Children's Hospital of Philadelphia) to get kids evaluated faster for EI Autism related services. Although I don't remember which county in PA you are currently in, I do know that it is a statewide program. Maybe Ella isn't on the spectrum, but wouldn't it be good to have a team of autism specialists look at her anyway? The Team consists of a bunch of therapists (Speech, Occupational, Physical) and a Developmental Ped out of CHOP (although I can't remember the name of the particular doc right now), and its the same two day process that I've heard CHOP runs (1st day observation, 2nd day evaluation with parents and whole team). You would be able to get Ella looked at relatively quickly (within two months) and if there are red flags, they will get you services.
My coordinator was awesome with recommendations for me. She was like, "Let's ask for the moon: 20 hours of wrap-around services (ABA therapy, play therapy), a specialized playgroup for Spectrum Kids 8 hours a week, in addition to his other 5 hours of therapiest (special instruction, speech and OT). We'll just keep going until they tell us 'No'." All this for my baby boy and he is not even 2 yet. I was scared, but I thought, you know what. Let's go for it. How can it hurt him? I will make sure he gets plenty of downtime on the weekend and evenings. Let's see if we can impact this now.
Gosh, I was so looking forward to not having to worry about this. I would have felt so much relief (as you did) if my younger son had been born a girl. But...such is my lot in life. As I tell myself on those "hairy days", there are tons of parents that have it better than me, but there are also tons of parents that have it worse than me.
Take care. *Big Hug*
Gemma