MrsDestructo

dragonflyinn

We are on EleCare right now. 

I have also been meaning to write you about our EI evaluation.  Wondering if this is how they do it here in AZ because I expected something totally different.

A young girl came to the house (couldn't have been more than 22) and sat on the couch and asked questions. She didn't even touch the boys.  Certain things I wasn't sure on the answers so I asked, could we try and see if he can do this or that, and she would shrug her shoulders and say, yeah, I guess if you want.

I am still waiting to hear back if we qualify, but I guess I expected something more like what the state NICU nurses do when they come out to the house.  Is that what your EI evaluation was like?

sweater

((butting in))

Your EI eval sounds crappy at best. Boo. Now I'm not all too excited at our service, but I wouldn't be happy at all with that experience! We've JUST started weekly occupational therapy for Jax and he needed it SO bad with his neck problem...which was JUST diagnosed this past month and the therapist is shocked nothing has been done before now. You've got to keep pushing until you get someone who is good and cares.

The girl that came to your house sounds like a piece of work!

What are your concerns for the boys? Maybe we can pull together some suggestions for you to make some calls about.?

Mrs. Destructo

Yeah, the whole EI process was really frustrating for me. First a case manager came out to our house. She was also really young, like no more than 23-24 years old, and she was wearing ridiculous high heels. It sure made me feel like crap to have my crazy mom hair sticking out all over the place and dirty dishes on the countertop, sitting next to this teenaged Barbie doll.

She scared the crap out of me. She pulled out one of those Ages and Stages Questionaire things, but she did the one for their actual age, not their adjusted age. They were about 7 months old at the time, and there's a huge difference between the abilities of a 7 month old and a 4.5 month old! Anyway, when she left I was seriously freaked out because they were below the 25th percentile line for every skill.

A couple of weeks later an evaluation team came out. There were 3 people: a PT, a speech therapist and a general developmental specialist. They all went through separate evaluations where they played with the boys and tried to get them to do a bunch of different skills. This team evaluated the boys based on their adjusted age, and when they were done they told me that the tiny Barbie doll majorly screwed up, and she should have used the adjusted age ASQ form. And had she used the adjusted age ASQ form, they wouldn't have even come out for an evaluation.

 So I'm guessing that the person that came out to your house is a case manager, and she was doing the initial assessment to determine if a team should come to your house to do the real EI evaluation. Does that sound right?

dragonflyinn

Thanks Sweater.  I was surprised at the "evaluation" too, it wasn't an eval at all.  My mom was at my house at the time and I said, why couldn't we have just done that on the phone.  She didn't do a thing with the boys and didn't even really watch them.  At the end, she said that she usually see's older kids so this was "neat".  Umm glad I could freaking entertain you for an hour.  

Anyway, he has torticollis and I had to fight and fight with the pedi (finally ended up changing pedi's) in order to get a referral for him.  We finally got him into PT which has been a huge help.  He has gross motor delays (like due to the torticollis).  The annoying thing is, I went to the pedi about this when he was like 6 weeks old to try to get some exercises and he blew me off.  I wonder all the time if he wouldn't even be delayed if the pedi would have started to help when he was tiny, but oh well.  I didn't stop til I got him into PT but he was 7 months before that happened.  

He has been doing well in PT, but they mentioned he may also need OT and I have to drive about 50 minutes each way to the PT and thought it would be so much easier if they were coming to the house so I am seeing if we qualify through EI. Not sure his delays are significant enough, but hopefully will hear by the end of the day. 

dragonflyinn

MrsDestructo

Yep sounds like what happened here.  I am wondering which age she used, because I answered a lot of "no's".  She appeared to have no baby experience, but as you say, she was likely just the case manager and the rest will follow.  I am going to call around 9 and see what I can find out.

thanks

sweater

WOW...I totally hear ya on the torticollis thing! I keep wondering the same thing about getting help earlier. So we JUST started OT for Jax's problem, and the therapist said it definitely should've been caught earlier. She said it severely limits their development if not treated.

She also gave me info on something called "Brushing technique" that's supposed to help their motor skills extrememly well, supposed to stimulate their senses. I'll read up on the info she left me, and if I think it's worth anything, I can make copies and mail it to you.

We are just now doing therapy each week in our home - isn't it frustrating to know it should've been started weeks/months ago?!

All our doctors have been SO focused on Jaxon's weight/reflux that his development has been overlooked. I understand I guess...but its time to focus on the whole child now. He's like a limp doll compared to his brother...and I know his brother isn't some rockstar either...so that makes me think Jax is even worse than I thought in the first place.

All we can do is push forward right? How bad is his Torticollis? Is his head tilted to one side all the time? That's what we're dealing with...he couldn't even look to his right side - ugh.

dragonflyinn

No kidding, and the thing that kills me is I ASKED for help.  I wanted to start treating it, but I was blown off and treated like a crazy mom.  I realize that it is not the most severe case of torticollis, but now he has delays and the PT said it was due to his untreated torticollis, which is why I have turned into such a nut about everything else, because I don't want other things to be "missed" as well. 

He is a tilt to the left rotate to the right.  So his head is always tilted to the L and kind of twisted a bit to the right (not sure if that makes sense).  If you look back in the blog you can see that he almost always has a tilt, but it is definitely getting better.  He can turn to both sides now, but not all the way in both directions.  He also had an entire left sided weakness that they think may be due to the torticollis, so we have been working on that.  He still tires really easily.  So, when he first wakes he can hold his head up pretty well, and there isn't a huge tilt, but after being up for a little while his head starts to droop, I have some pictures that just break my heart because at times he can hardly even look up.  Like I said though, we have only been in PT for a month now and the difference has been remarkable.  He is even able to sit unassisted which is HUGE.  He is always so far behind his brother in things like that, but they both did it within a week of each other. 

Shawn is also much floppier than Ethan.  No one has ever said that he has low tone, but all say that he has lowER tone they are always stressing the difference, and he is described as soft.  You can also tell in pcitures that his tone is softer because his mouth is always open when he is at rest and they said that was due to his lower tone as well.  I always get into trouble comparing the boys too, I finally convinced myself that it wasn't that Shawn was soft, Ethan was too stiff (ha, I have to rationalize everything)  I of course, was wrong, because they always say he has lower tone, but hey, I tried right 

Yeah, you will have to let me know about the brushing technique, I haven't heard of that.  Are you doing stretches and neck massages every diaper change?  I started doing that on my own when he was like 8 weeks because regardless of what the dr said, I thought there was an issue.  Admittedly, I stopped after the dr told me I was just making shawn "upset" for no reason because he was fine, and then boy did I kick myself for letting him convince me of what I knew was wrong the PT and orthopedi surgeon were shocked that we hadn't gotten a referral sooner.  The person who finally told us to get a referral was actually the pedi opthamologist, so I called the pedi and said, give it to me NOW, then swithched.