Small update on Avery--more worries for me

So, the baby's born, what comes next? Discuss your postpartum and parenting concerns here.
deerhart
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Re : Small update on Avery--more worries for me

Postby deerhart » Tue Mar 29, 2005 01:15 pm

You should be able to get it at all 3 places. I know borders and such have a whole section on autism and sensory disorders.



Erin

Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

mamc2003
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Re : Small update on Avery--more worries for me

Postby mamc2003 » Tue Mar 29, 2005 11:56 am

Thanks for the well-wishes Nancy

Erin-- Is that a book that I can pick up at the library or bookstore, or is it something I can find on Amazon?

I heard from EI today. They will be here next Wednesday to start the evalautions. She said that there will be 3 meeting before we start the therapy. The first evaluation is an ages and stages questionare. They don't have any physical therapists in our area, only a speech therapist. But, at least we have something to go on now.

I will update next week, when we get through with the meeting.

Mandy
Mom to:
Audrey (born 35 wks pre-e) 5 lbs 4 oz; Now three years old
Avery (born 35 wks pre-e) 5 lb 12 oz; Now over a year

deerhart
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Re : Small update on Avery--more worries for me

Postby deerhart » Sun Mar 27, 2005 10:05 pm

Mandy

You might want to also read books like the Upside Down child and there is another one that I forget the name of that really talks aobut some of these issues (especially SID) which can be helpful in trying to understand what is going on with your child.

Erin

Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

paljane8
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Re : Small update on Avery--more worries for me

Postby paljane8 » Thu Mar 24, 2005 07:17 pm

I am sorry you are going through this, Mandy. I think your dr's office needs to give a better explanation. I hope that EI has answers for you. Let us know.

Nancy




mamc2003
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Re : Small update on Avery--more worries for me

Postby mamc2003 » Thu Mar 24, 2005 02:12 pm

YAY!!!

I called the state's early intervention and was told the Dr's office should have referred her to them within 48 hours and not to a private therapy center. The lady said she would call the dr's office and let them know they are doing it wrong. I should hear from EI by Mon/Tues and they will evaluate her within 10 days. I am so excited that I don't have to wait 2-3 months to find out what is doing on. I didn't know that parent's could ask to be seen by the therapy. Had I known, I would have called back in Sept when a problem was suspected. I'm just glad that we've got the ball rolling. Thanks everyone for your wonderful advice.

Erin--some of the things you mentioned really hit home about Avery. I have a website that someone sent that I've got to look into and see if she falls into this category. The social interactions and not looking in the eyes is similar to what Avery does. She has to be in a really good mood to let someone besides Mommy play with her. She doesn't even like for others(her daddy included) to get close to her most times. She also rarely holds eye contact. I plan on looking into it closer. Thanks so much for explaining your son's condition to me.

Mandy
Mom to:
Audrey (born 35 wks pre-e) 5 lbs 4 oz; Now three years old
Avery (born 35 wks pre-e) 5 lb 12 oz; Now over a year

deerhart
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Re : Small update on Avery--more worries for me

Postby deerhart » Wed Mar 23, 2005 07:14 pm

Sensory problems are extremely common (in fact most people have at least one... I can rattle off a list of mine, and many seem to run in the family like disliking tags in the clothes). Our OT said sensory issues are considered normal unless they interfere with life (for example she told us about a child that would get physically ill when touching certain types of materials). ALex does have some issues (he dislikes tags and avoids certain foods like potatoes, and has some issues with his hair and ears which we have almost resolved YEAH) but none of it actaully interferes with life. My youngest child also has a few.

For a diagnosis of PDD the following must be met PDD NOS
This category should be used when there is a severe and pervasive impairment in the development of reciprocal social interaction or verbal and nonverbal communication skills or when stereotyped behavior, interests, and activities are present but the criteria are not met for a specific pervasive developmental disorder, schizophrenia, schizotypal personality disorder, or avoidant personality disorder. For example, this category includes "atypical autism" – presentations that do not meet the criteria for autistic disorder because of late age at onset, atypical symptomatology, or subthreshold symptomatology, or all of these.

The diganosis criteria for autsim (in a nutshell) are
1) marked (sever) social dysfunction including lack of eye contact, failure to develop peer relationships, lack of emotional or social reciprocity, and lack of spontanous enthusiasm

2) severe speech delay: either no speech at all, or if have speech severe inability to sustain conversations, echolalia (repeating words without meaning/reason) and lack of sponanous pretend play

3) repetative behavior (usually called stimming) or preoccupation with certain sterotypical things, very ritualistic

4) delays with onset before age 3 in social interaction, language/communication, and pretend play

5) doesn't fit better into other catagories

Have to meet a certain combination of traits from each section for qualification.

Now here is the real kicker. A child with a normal run of the mill speech delay will exhibit many of these signs. A child with a speech delay can have severely delayed social skills becuase of their delay. Their ability to sustain conversations can be severely impaired as well.

Alex had the severe speech and social delays, echolalia (though it is agruable if it was with or without meaning becuase as time went by it became more and more obvious he was using this as his form of communication instead of regular language becuase he couldn't make regular lanmguage), ritualistic behavior (though it varies from thing to thing how rigid he truely is), and the lack of eye contact. On the other hand, he had spontanous pretend play, extreme social and emotional reciprocity, absolutely no self stimmulating behaviors (stimming). Also, as his speech delay has improved, many of the other behaviors have also either improved or disappeared. He rarely echolalias anymore and he rarely inserts lines he's heard from movies and such in place of his own speech (though he does repeat mom and dad). Its quite suprising that his social interactions (and speech) with peers in play is actually ahead of his conversational speech at the moment. Further, his intelligence pointed away from a true autism diagnosis. This still left us with PDD but many felt it wasnt' appropriate becuase the social delays, while severe, seemed to come from the speech delay. His offical diagnosis should probably have been a mixed expressive/receptive delay (which is what the psychologist said fit the best atm). Its very hard to imagine a child who adores and desires to be kissed and cuddled almsot constantly is socially impaired outside of his speech (quite frankly its to the point that we wonder if he isn't also oppsessive compulsive or at least have some VERY strong oc tendancies)

as a side note, my perfectly normally developing youngest child who is extremely social and developed peer relationships more then adequately also fails to look at you when talking to you so its just us I think hehe.

We have run through the gamit of diagnosis to be sitting here 2 years later still with no diagnosis beyond the m e/r speech delay. We chose to fight a pdd diagnosis simply because in our gut we felt it didn't fit our child. We still think we are right, though I am sure some docs would and wouldn't agree with us.

As for the SID, like I said before we all have it to some extent (technically motion sickness is a sid issue) and most of us learn to live with them and they turn from issues into personal quirks (like the fact that I hate wearing shoes and socks and shed them whenever possible). They can be found in both normally developing children and children with delays. They can be addressed in many ways depending on the issue (brushing and pressure/weight is very common)
HTH

Erin

Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

kylesmom
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Re : Small update on Avery--more worries for me

Postby kylesmom » Wed Mar 23, 2005 05:51 pm

HI Mandy- I sent you an email with some more info and a few links that you might find helpful. [:)]

Jennifer 33
Kyle born 8-13-03 @ 38 weeks (PE and Class I HELLP)

meg
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Re : Small update on Avery--more worries for me

Postby meg » Wed Mar 23, 2005 03:13 pm

PDD is "Pervasive Developmental DIsorder" its kind of a "catch-all" term for autistic spectrum disorders. Its often used in mild cases or when symptoms of autism are present but the child doesnt exactly meet the full diagnostic criteria. If you think your daughter has speech delays AND sensory problems, this may be an area for you and your doctors to look in to.

Meg-Moderator for After Your Baby is Born
Will 2-6-00 (PE at 35 weeks 4 days)5lb 1 ounce
Elizabeth 7-3-01 (NO PE or PIH)8 lb 12 ounces
Katherine Grace 10-8-04, 6 lb 10 oz (oligo at 37.5 weeks but PIH/PE free)

mamc2003
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Re : Small update on Avery--more worries for me

Postby mamc2003 » Wed Mar 23, 2005 02:22 pm

Thought I'd update again. I called the neur. this morning and her appt is set for June 21, that's the earliest they could get her in. I then called therapy and asked when that would start. They said, anywhere from 2-3 months!! So, then I called the ped's office to ask if there was another therapy we could go to. The nurse said that was the only place that did both speech and physical therapy. I asked why we were even going to a neurologist since we didn't even know if something was wrong. She said they like to have all their bases covered in case there is a dev. delay. I'm thinking they wanted me to go ahead and schedule it now, so that by the time we get into therapy, the appt would have already been made, instead of having to wait another 3 months. That's what I think, anyway. The receptionist at the neur. office said if we were evaluated by therapy and nothing was wrong, we could just cancel the appointment.

Erin- what is PDD? I think Avery might be SID because she doesn't like loud sounds, or someone getting in her face, or weird textures. But I haven't read up enough on it to really say that is part of it or not. I need to look into it a little more.

Thanks so much for your advice for me. I'm feeling a little better now that I talked to the nurse. Thanks again.

Mandy
Mom to:
Audrey (born 35 wks pre-e) 5 lbs 4 oz; Now three years old
Avery (born 35 wks pre-e) 5 lb 12 oz; Now over a year

meg
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Re : Small update on Avery--more worries for me

Postby meg » Wed Mar 23, 2005 06:43 am

I think I would try to ask a few more questions. Is there signs of something they are not telling you? or specific neurologic signs they see and havent told you? From my experience going stright to a neurologist is not the typical course of action unless something specific neuroligcal is suspected.

Meg-Moderator for After Your Baby is Born
Will 2-6-00 (PE at 35 weeks 4 days)5lb 1 ounce
Elizabeth 7-3-01 (NO PE or PIH)8 lb 12 ounces
Katherine Grace 10-8-04, 6 lb 10 oz (oligo at 37.5 weeks but PIH/PE free)


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