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I am going to cry... (x-posted)

Forum: Children with Special Needs


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December 16th, 2009, 12:15 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
Most of it I'm sure is hormones, but I hate this stupid freaking state. We moved here cause DH can't deploy from here, but it's taking a big toll on DD's care.

We're using the States early intervention, but here they're so understaffed/overbooked that Carrie only gets half the help she needs. Our last duty station we were in KY. State's intervention program deemed that she qualified in speech and in motor development. Her delays are so severe that in KY they gave us a physical therepist and a speech therepist weekly (the doctor they sent us to in OKC also agrees that she needs weekly therepy). Here they stuck her with a "developmental specialist" becuase they can't afford to give us a specialist in each field... even less frequently than we were already receiving.

The "developmental specialist" was USELESS. She'd come into our home and ask what we'd been working on for the week, then we'd spend the hour (all the time we have) doing that... excuse me but I'm not the medical professional here. I shouldn't be determining the activities of our sessions. This became a real problem, so we insisted on a specialist. We got Angie (she's a Physical Therepist) and has worked WONDERS with Carrie. Carrie still can't walk, but the progress she's made is just incredible. The only problem is that becuase of this we have been completely unable to work on speech. I figured progression in one area and stagnant in another was better than stagnant in both.

We had another program working with Carrie and she was doing the best she can in regards to speech but Carrie is so very far behind and in ways that a RN isn't trained for. The RN told us a couple months ago she'd done everything she can with Carrie and she needed more specialized help.

Well as of a week or so ago, Carrie is regressing in her oral motor development. It used to be so bad that she'd choke/gag on stage 3 baby foods cause she was unable to manipulate her tongue. It's going back to that. She's spitting out food if she's got just a little more than a small bite at a time. Instead of grunting and trying to get to what she wants she's just sitting and screaming for it.

I feel like I'm in a lose-lose situation. There is no speech therepist in Lawton under our insurance (not sure if there is one at all) that's not associated with the intervention program, and if I get her into the speech with them we lose her physical therepy. I can't have her go backwards with both.

When I ask for both (even on a less frequent basis) they basically tell me that they can't treat my daughter as more important than anyone else's, but I don't feel like that's what we're doing. If you have a child with speech delays you send them speech help, if you have a child with physical delays you send them PT help, it's not my daughter's fault that she's got both.

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."

Last edited by C&K'sMama; December 16th, 2009 at 12:23 PM.
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January 6th, 2010, 10:59 AM
iamkc's Avatar Platinum Supermommy
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Location: Montana
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I'm soooo late in replying to this. I'm so sorry that you're having a rough time getting Carrie's care in order! What state are you in?

I'm so glad that Carrie has made progress in gross motor! Hooray! That's so much work, but no doubt it's worth it to see her start in the direction of a scarily-mobile toddler!

If the developmental person isn't willing to work with you, perhaps you can contact a few different places for help. United Way here has partnered with several therapy programs, so they're sometimes the best way to locate a new one (all covered by state insurance, usually). We have multiple centers here, then one at the hospital, and even some associated with schools who do it on the side. If you can't find anyone like that, contact an ENT. The nurses at the ENT here seemed to understand some of this stuff, and a few were even working with Milo, doing speech therapy-related stuff, to try to get a look in his mouth. The ENTs are usually pretty proactive with kids with syndromes or special needs-even if you don't go IN to see a doc, I bet they'd know someone somewhere who could help you. IF THAT FAILS, you may have to do most of the work on your own-NOT fair, and NOT how the system is supposed to work, but if it comes down to it, that may be your answer. Milo had to miss a lot of therapy sessions due to illness, but we did it on our own, and I DO think that he's made a bit of progress! I have some websites, if you want them.

Really, I'm just sorry that you're going through all of this! I see that you're due with Katie in a couple of weeks! WOW! So much going on...I hope that you're able to find some time to rest!!!

Many hugs. You're doing great, Mama!
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January 6th, 2010, 01:46 PM
C&K'sMama's Avatar Platinum Supermommy
Join Date: Sep 2008
Posts: 6,150
We've since (on the recommendation of one of the programs we're working with) switched Carrie's pedi and this lady is really on top of things. Her hearing is going to be reevaluated, and she's trying to get us sent to a sppech therepist not associated with the state.

Still having lots of other problems and with Katie's impending arrival, I'm a little overwhelmed, but it's better than going backwards with no help.

"Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live."
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