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  #1  
February 24th, 2009, 01:30 PM
Kasadi's Avatar Super Mommy
Join Date: Feb 2006
Location: VA
Posts: 792
Hi ladies!
I think I lurk more than post, but I still wanted to introduce myself see if there is any advice that can be given.

My name is Kasi and I have a daughter named Keira.
She is 2 yrs, 7 months old and was diagnosed with expressive speech disorder in June of 2008.
Keira also has eczema and is allergic to peanuts, dairy, eggs, dust and dogs. She outgrew allergies to corn, soy and wheat. After Keira had her hearing tested (which came back normal) and she was diagnosed with a speech disorder we were put on a waiting list for speech therapy. She started therapy in September and was only able to go until the end of November because of insurance changes. Our current medical insurance will not cover speech therapy until the child is 3. Even after the child is 3 a disability has to be diagnosed in order for them to cover a portion of the therapy cost. In January I was doing research online and found information on apraxia and Early Intervention. I contacted our local EI branch and we have an appointment in March to have Keira evaluated to see were she is now in her delay and if she qualifies for EI services. I am so upset I didn't know about EI sooner. We live in Virginia and EI ends when the child turns 3 (Keira will be 3 in July). Basically if Keira does qualify for EI she will only receive help for 4 months. I figure getting some kind of help, even if it is for a short time, is better than just waiting and doing nothing. I think Keira may have verbal or some form of apraxia. Right now she says about 30 approximate words/sounds. She has very few real/true words she can say (Hi, Mama, Mom and Dada). Everything else is a “Keir-ish” words Examples are La-la = hotdog or music. Co-Co = chocolate soy milk. Ine-Ine = food or hungry. She very rarely puts any words together to form a sentence. Sometimes she will say something and shock me, but then she will never repeat it again. An example was when I asked her if her thumb hurt (because she had a patch of eczema on it) and she said "Dat not ow-ow". I was over the moon happy! But the sad part is she hasn't repeated it again or any other sentences like that. She is pretty good at using the few signs her SLP taught her (more, help, food, music, drink, fish). She is really a wonderful mime and re-enactor lol. When she wants me to understand something or she was to tell me about a scene from a movie or something she did or saw she will re-enact it pretty dramatically, which I think is great.
I think in the last 2 months I have come to the realization my baby is not going to just outgrow her speech delay and that there really is something wrong. I feel guilty for not finding out more until just recently. I think I was hoping and believing people were right when they would tell me she would just start talking eventually. I can't tell you how many times people have said "Soon she will be talking so much you will want her to be quiet". I don't think people whose children talk can even begin to understand how fortunate they are that their child can communicate with them.
One of the most heartbreaking things for me is not knowing what is going on in her mind or being able to know what she is thinking. It amazes me when I am around other children Keira's age and I hear them talking and I hear their thoughts and opinions on things. I worry that I don't really know who my daughter is because she can't tell me her thoughts. It kills me inside.
I have been pretty emotional lately, which frustrates me because I know crying about it isn't going to make anything better.
Keira can get pretty aggressive and angry and I am worried how much her not being able to communicate is affecting her personality and happiness.
I have left messages at a local university's Department of Communicative Sciences and Disorders. I have heard I can enroll Keira in a community program with the SLP students and she can received free or low-cost speech therapy. I have called twice and I am still waiting for a call back.
I also called the school district to see if I can enroll Keira in an Individualized Education Program. That was yesterday and I still haven’t received a call back.

I hope I am taking the right actions to insure Keira will get the help she needs.
If there is any advice you mommies out there can give me, I would be extremely grateful!

Thanks!
-Kasi
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  #2  
March 3rd, 2009, 07:35 PM
amberjolie's Avatar Super Mommy
Join Date: Nov 2006
Location: Ontario
Posts: 884
Hi Kasi,

My son, who is 2 years 2 months, also has what his speech therapist thought is apraxia, so I know where you're coming from. We were also told all the same things as you, and still are, that he'll all of a sudden open up and be talking, etc, etc, but we've known since he was about 1 that there wasn't something right. We have two older children, and although it's true you shouldn't compare, we had a good baseline of an early talker (my son), and a late talker (my daughter) to realize our little guy was just way behind. We have EI around here, but it doesn't really do much serious stuff at his age. We've got him going to a speech therapist who knows apraxia well, but it's all through my insurance and that's limited in the amount we can do.

The fact that Keira says some things some times and then can't repeat it is all very characteristic of apraxia. I think you're doing the right thing to just try every avenue you can, and keep bugging people until you can get some help. We're also running into some roadblocks. We heard that apraxic kids do very well in learning environments for hearing impaired children, but they won't let us in here unless he is severely or profoundly deaf, but he has normal hearing. We got books on signing and are teaching him as much as we can - he knows about 45 signs now on his own, and seems to enjoy learning new signs (more than learning new words). Oh, and we find he's our most tempermental child as well, likely due to the communication issues. But it did get a bit better once he learned some signs.

Maybe try to learn and teach her more signs, too, because that way she'll be able to tell you more about what she's thinking, and sometimes visual cues like signs help children to remember how to form the words that accompany them. I just bought a signing dictionary and use that for the things he seems to use the most.

But definitely keep at everyone to get her whatever help you can. I can't say we've personally had any success, but only squeaky wheels get the grease, so there's no harm in continuing to ask whatever you can.

I wish you all the best in finding the support you need for Keira!

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  #3  
March 8th, 2009, 05:43 AM
Mega Super Mommy
Join Date: Jun 2008
Posts: 3,492
I too can understand a lot of what you are saying. Our twins are 2 yrs and 1 month. Our son doesn't say any words and our daughter says a few animal sounds. Nathan was just dx'd with PDD-NOS but we have yet to have Reagan evaluated for anything.

We just had a 2.5 yr old over to play yesterday and she was talking up a storm and bossing our daughter around. It is really hard to watch other children their age doing all the typical things. Of course people say the same thing to us that they will just be late talkers, I know they mean well but they can never understand what we are going through unless they have been there.

I'm sorry that you didn't know about EI early. That would upset me too. You would think maybe your pedi or someone would have recommended it. Once ours outgrow the EI program at 3 they move onto the school district program called DART. We are in PA and I don't know what other states have or don't have but I thought I'd mention it since maybe there is some state funding for 3 and up in Virginia?

I think you are doing all the right things by calling EI and making those repeated calls to the university. You can't change the past, so just do what you can do for your daughter from this point forward.

I think you are a fantastic mommy for picking up on your daughters delay and doing what needs to be done.
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