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Old 07-11-2012, 02:38 PM - Thread Starter
 
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Hello, my daughter was diagnosed with achondroplasia (the most common form of dwarfism), and we are starting EI. What are people's experiences with EI? I know they come to your home for therapy, etc. This is all so new to me, I'm not sure of the right questions to ask!

 

Thank you!

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Old 07-11-2012, 07:11 PM
 
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Originally Posted by MamaMartinka View Post

Hello, my daughter was diagnosed with achondroplasia (the most common form of dwarfism), and we are starting EI. What are people's experiences with EI? I know they come to your home for therapy, etc. This is all so new to me, I'm not sure of the right questions to ask!

 

Thank you!

I think it differs from state to state, and even from city to city.

 

Do you know what kind of interventions are planned?  Physical therapy?  Occupational therapy?  I guess you would need to know what the challenges are so that you would know what is needed.  Has the doctor or doctors who signed off on EI given you any paperwork or any official diagnoses, besides for the achondroplasia, like, is there any unrelated speech delay that needs to be helped along?  Or is it just physical issues?

 

My only experience is with autism, so I don't know if my experience will help you, but one thing I found was that, in many cases, I needed to know more than the people who were treating my child. Sometimes they weren't well-trained, sometimes they weren't very sensitive, and sometimes they kinda blindly followed what they learned in a text book instead of what my child needed.

 

I don't mean to sound negative--we had some FABULOUS therapists, who knew reams more than me.  But schedules and personnel changed year to year, and we did have some potentially awful ones, too, and I needed to know either how to supervise them, or else how to request someone else.

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Old 07-11-2012, 09:34 PM
 
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It varies greatly from state to state.  Basically, they will send a team out to do an eval of your child.  Based on that they will decide what therapy is recommended and how often.  You can refuse any or all of it.  In our case, at 5 months (after a serious anoxic brain injury), ECI recommended Nutrition services (for new tube feedings) once a month, Developmental services once a week, and OT and PT once a week, and vision therapy once a month.  No speech.  Our insurance covered therapy (and we eventually got MDCP, or Katie Beckett Medicaid), so we switched to private OT, PT, and Speech because she needed more therapy than ECI would give.  The dev. therapy was kind of useless for us since we had awesome therapists.  However, the dietician was FABULOUS.  She totally supported me continuing to pump until DD was 2, and was very supportive when I decided to give her blended real food instead of formula.

 

When DD was 2 1/2, they started transitioning us to the school district.  Since we had private therapists, we really only lost the dietician.  We opted for homebound services instead of going to school, so we have a teacher that comes out once a week for an hour.  There is also a ST who specializes in alt. communication who comes out once a month.

 

Our overall experience was good.  Just keep in mind you can always decline services and go with private services now or later.  We have close friends whose insurance did not cover therapy, so they used ECI therapists until they were able to get medicaid for their daughter (about 8 months).


Wife to M , Mommy to DS aka Captain Obvious  (06/06) and DD aka Lissalot  (03/09, anoxic brain injury)
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Old 07-12-2012, 10:21 AM
 
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We had a great experience with Early Intervention.  I called them when DS was 2 because he was not talking.  The team came to our house and did an full eval.  He was found to be delayed in language as well as motor skills and social skills (I was shocked). 

 

We were offered services either at our home or at the center.  If we did services at home, one intervention specialist would come regularly and a speech therapist and occupational therapist would come occasionally on a consultant basis.  If we did services at the center, the speech therapist and OT would be able to work with him directly almost every week.  We chose to do services at the center for this reason. we initially started with 1 hour a week.  After a couple of months, DS was offered a spot in the EI "toddler class", which was a preschool-like program at the center.  It was 10 hours a week and would provide him with more services.  He enjoyed this setting a lot and benefited from it greatly.

 

The Early Intervention staff were pretty sure that DS had autism, but they were not able to make that diagnosis.  They gently urged me to see a developmental pediatrician and get a medical evaluation.  The diagnostic process took about 5 months and the EI therapists were a great help, providing guidance and support and well as filling out a bunch of rating scales for the dev ped.  They were genuinely interested in helping DS make progress and helping me understand what was going on with my child.

 

DS transitioned to the school district's special needs preschool just before he turned 3 and the EI staff were great in helping with that as well.

 

Like I said, we had a wonderful experience with EI. Unfortunately  it does vary from county to county and I know that  just the next county over from ours the services are not very good.
 


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Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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Old 07-12-2012, 02:19 PM
 
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I loved our EI therapists. DS1 was in EI for 18 months until he aged out on his third birthday. We now receive services through our school district which is sorely lacking compared to EI in my area. I would give anything to be back in EI still. greensad.gif

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