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Forum: Children with Developmental Delays and Disorders

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  #1  
October 24th, 2007, 02:14 PM
fiefer87's Avatar Mega Super Mommy
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My daughter was just newly diagnosed with autism. We've known all along that there were autistic tendencies, but her teachers and therapists have taught her and worked with her as if she has autism. She was born with a condition called septo-optic dysplasia. This is a pervasive condition that causes visual impairments (the optic nerves stop growing), has pituitary involvement (she is growth hormone deficient, adrenal insufficient in stress situations, and has a hypothyroid condition) along with brain structure and function abnormalities (she has an absent septum pellicidum - the webbing between the 2 hemispheres of the brain, an underdeveloped corpus callosum - the main area the nerve bundles travel through in the brain, a possible slow developing hydrocephalus, moderate MR (which I don't really agree with, but we'll get her retested in a couple of years), and the autism.

So my problem, which is why I sometimes think I am in denial, is that with everything that is going on, I sometimes think autism is not the best way to describe it or may just be a catch all because they don't want to really look at the cause of her behaviors. There has been almost no research done on children that are blind or visually impaired and diagnosed with autism. The little research that has been done was done in the 70's and 80's and suggests that children who are blind or VI and diagnosed with autism, autism is not a correct diagnosis. Some researchers suggest that while the behaviors are the same or similar, the causes and pathways for these behaviors are vastly different between sighted children and blind or VI children. Some research also suggests that normal therapies for sighted children with autism don't really work on blind or VI kids. BUt the studies were so few and far between that its hard to draw any real firm conclusions.

So I don't know if I am just not wanting to deal with this and looking for a better explanation for myself, if I am doing her a disservice by not wanting to believe it, or if I just don't want to have to deal with another problem. We've had so many issues and we see 6 docs every 6 months, and 3 docs every 3 months, that I just don't want to add another one to the mix.

Somedays I think I am dealing well, since the autism diagnosis wasn't unexpected, but today is really not one of them. Thanks for listening ladies.
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  #2  
October 24th, 2007, 10:27 PM
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Wow. Many hugs to you. You have a lot on your mind...I wish I had something remarkable to say that'll make it all better.

Well, I can say that many new doors are opening up in regards to autism and studies, so I'm hoping that one will be done that can help you understand your situation better.

I understand the denial you're feeling, and, honestly, even if you don't agree with it all, the services/therapies that come with the diagnosis are blessings, IMO. Many parents find they can't do it themselves because their children act differently between them and the therapists. I don't know if you have your daughter in any therapies, but I know Early Intervention did wonders with my son. He still has some issues, but he's doing better than I had hoped back in 2001.
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  #3  
October 25th, 2007, 09:14 AM
fiefer87's Avatar Mega Super Mommy
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She fortunately has been through EI, a special ed preschool, and now she is in a 12:1:1 special ed kindergarten. She receives OT 5 times a week, speech 5 times a week, PT twice a week, O&M 2x a week, and vision 4x a week. That has definately helped, but I guess I just wonder if the approaches to her therapies should be changed.
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  #4  
October 25th, 2007, 10:06 AM
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That must be so much more difficult for her, hugs to both if you! I know Gus has had great success with his picture social stories and Picture Exchange, but do those methods even work for your little girl? What a lot of patience and perseverance you must have.

Maybe with some luck someone will soon be doing a study or therapy that is more specific to her diagnosis... hoping for you and her!
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  #5  
October 25th, 2007, 11:23 AM
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Thanks. I don't know why, but we never did Picture exchange or picture social stories. We brought it up once, but now with the progress she's making in her speech, i guess her therapists want to force her to use her words
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  #6  
October 25th, 2007, 12:48 PM
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I think I phase in and out of denial but I know that with my dd, the medical community has been in denial as well. Her problem has always been that she's very articulate and her speech is great. People think that if you have great speech, you're "soooo smart" We've had a hard time getting anyone to see that there really is a problem and once it was recognized, it was hard to get anyone to see how deep it is. Most of the time, I'm just tired.
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  #7  
October 25th, 2007, 03:14 PM
fiefer87's Avatar Mega Super Mommy
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That's got to be really rough. I know with Alexis, her diagnosis tells most doctors that there are going to be some major, pervasive problems, but I don't think they truly understand either. It's a relatively rare condition as well, so not many doctors have a lot of experience with it. Our opthalmologist has only seen about 6-7 cases in his 30 years of practice.
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  #8  
October 25th, 2007, 08:44 PM
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Actually there has been research done recently and its been found a lot of children with vision problems, namely cvi which is hard to dx, is a lot of times misdiagnosed as autism. and the unfortunate truth is autism has become a more politically correct term for explaining a lot of other syndromes and conditions...at least in my area....so I hve issues with that that I wont get into lol. But you just have to keep speaking up and requesting things. that's all you can do. As for pictures and words....the use of pictures or PECS can jump start speech and increase it and promote it! My son had NO speech until the pictures! And he's gone from 3 words in May...maybe it 5 I need to double check..but I know 3 for sure to now he has nearly 100!
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  #9  
October 26th, 2007, 07:09 AM
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Quote:
Actually there has been research done recently and its been found a lot of children with vision problems, namely cvi which is hard to dx, is a lot of times misdiagnosed as autism. and the unfortunate truth is autism has become a more politically correct term for explaining a lot of other syndromes and conditions...at least in my area....so I hve issues with that that I wont get into lol. But you just have to keep speaking up and requesting things. that's all you can do. As for pictures and words....the use of pictures or PECS can jump start speech and increase it and promote it! My son had NO speech until the pictures! And he's gone from 3 words in May...maybe it 5 I need to double check..but I know 3 for sure to now he has nearly 100![/b]
I am apparently looking in the wrong places or using the wrong key words because I haven't found any of those. If you could let me know where you found the research I would greatly appreciate it. And not to sound stupid, but what is cvi? I have never heard of it and no one has mentioned it. I wounder if I should speak to her speech therapist about the PECS and see if it is something we should consider. She has a larger vocabulary, but still has trouble telling us what she wants.
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  #10  
October 26th, 2007, 10:29 AM
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What you could do is google her dx +autism and see what you come up with. Is her condition considered a type of brain injury? If so, you may want to access the brain injury association in your area. The usually have some good information that they can send. My dd's original dx of Tuberous Sclerosis is not altogether common but becoming more so all the time and TS is linked to autism spectrum disorders. Her surgery is kind of rare too and a lot of the dr.'s we run into don't believe me until we produce the MRI's and then they say "WOW!"
Good luck to you and remember that second guessing is a good thing when it comes to finding the best for your dd. You're doing a great job!
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  #11  
October 26th, 2007, 10:08 PM
Mjp121212's Avatar Platinum Supermommy
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Well the web descriptions of CVI and the descriptions the dr's and therapists have told me differ for some reason. But in CVI there is nothing actualyl wrong with the eye or nerve, but how the brain processes the info. Its like they are looking at a where's waldo book all the time. If you were to take brown paper and put a brown bear brown bear sticker on it a CVI child couldn't find the sticker....2d images are not processed and they can't see it. The web describes it like looking through a slice of swiss cheese....but that's not the same. Its cerebral vison impairment or cortical vison impairment....I am sorry I don't remember which. I even asked our family opt. and his pedi and they both agreed that vison problems need to be ruled out since they can cause a sensory integration disorder, and if you thin about it a child who can not see properly and can't process the reasons why is going to have issues with other areas. Also some symptoms of vison impairment mimick autism symptoms (withdrawal, stimming....) and the same with CVI...they spin and shake their head and do odd things with their eyes, lack social skills, seem socially withdrawn, lack eye contact, and often lack communication skills as well. Google CVI and vison problems and autism. That's what I did. Or try common Autism misdiagnosis and see what pops up....something might catch your eye and warrent further investigation. My son is VERY social...he LOVES being around people and playing with kids, he understands he needs to communicate and really wants to but he jsut doens't understand how.....that's why I question his dx....but as of yet I've not found anything else that comes close to fitting...so I sympathize with your quest for answers....
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  #12  
October 27th, 2007, 08:43 AM
fiefer87's Avatar Mega Super Mommy
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Thanks. I definately don't think she has the cvi. Her optic nerves are grossly underdeveloped. They just stopped developing in utero. But a lot of the other issues, stimming, lack of social skills, spinning, head shaking, mouth banging, she does have. Although, I suppose there could be an element of cvi as well. I would guess you could have underdeveloped optic nerves plus changes in how the brain processes the info. It wouldn't really surprise me if she had those issues as well since the septo optic dysplasia causes brain structure and function problems. To date, we really don't know what if any functiional problems she has (besides the moderate MR), but on her EEG, there was one anomaly, but her doc didn't think it was a huge issue (something called a sharp wave) and on the second one she had after her concussion, it was gone.
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