Friday, June 25, 2010

Joelene, part 2

So the lady called back today.... there's really nowhere around here who will consider taking on a child as a patient at the age of 4. There was one place that has a provider willing to consider it, but she's full right now so we're on a waiting list. I guess I'm going to have to do some networking myself and find out if I can come up with something.

Consult lady also gave me the name and number to a doctor known throughout the country for his work with pediatric bipolar. We are not at all sure that is what we are dealing with but it is one of a few possibilities. The first step is finding someone to do a full eval on her... but for another year or two that may be close to impossible because of her age.

I have already set up for the school system to eval her at the end of August/beginning of September.

Seriously, I need a file system. I also need a cell phone that works as an organizer. I need to find a better way to keep track of all this stuff for each kid. I have papers everywhere.... and I'm slowly losing my mind. There's so much I want and need to accomplish that I keep double booking appointments and guessing because I'm not always at home when I'm trying to deal with all of this stuff.

Tuesday, June 22, 2010


Today's consultation bothered me more than helped. I have so much going on in my head that it's hard to really process it. The woman is positive that Jolie is ADHD or ADHD-Combination... not sure what that last one means but I intend to find but aside from that was next to no help. She's going to try and find a provider in our area to work with Joelene but said she doesn't feel confident about that since Jolie is only 4 and most providers (as in therapist... not med doctor) don't typically take on children this young.

Maybe I'll write more tomorrow.

Friday, June 18, 2010

More stuff..

So Lisa came out today from Early Intervention. It ended up being about an hour's worth of talking to me like I had no idea what I was dealing with. I think I finally made it clear that I've done this before and this isn't something new to me. She acted like she doesn't believe there is anything really wrong with him aside from a few sensory issues. I know she's wrong, and I'm going to keep on with our plan to get him evaluated by a pediatric neurologist to prove it.

The last thing I needed today was to be treated like I don't know what I'm doing. That aside, at least he will be getting weekly services from here on out to handle his sensory issues. I'd like some real valid proof that he understands language, but according to the eval they did earlier this week he's only at a 5-6 month level for receptive and expressive communication.

I finally have the eval....

Social Emotional -- 10 months
Cognitive Development -- 10 months
Fine Motor -- 12 months
Gross motor -- 14 months
Adaptive Development -- 13 months
Receptive and Expressive Communication --  5-6 months

Peter is 20 months old.

Thursday, June 17, 2010


So. Peter's Early Intervention evaluation was yesterday. I learned a lot. I didn't really think anything could surprise me but a lot of what they pointed out did surprise. Not so much that it was pointed out, but that I missed it to start with. I knew Peter has sensory issues, I knew he was developmentally behind in some areas... but I didn't look at it objectively enough to see the severity of the situation. I guess no matter how much you learn, study, and research you still miss things sometimes. Especially when the subject you are studying is so close to you emotionally.
My little man is 21 months. He's vibrant, energetic, and most of the time pretty happy. He loves Yo Gabba Gabba, Joelene, and being outside. He's my first little boy, and I love him more than my heart can even express. I've been accused in the past of being overprotective and of sheltering him, but I know now that I wasn't making the wrong decisions with him. I let him do things and experience things, just never too far from my reach.
Yesterday the team of 3 specialists came out to the house. I had Peter outside waiting for them so he could see them arrive and it didn't catch him off guard. They came in and we talked a bit while he ran around checking things out. The first thing they pointed out is how unsteady he is while walking. The words they used to describe his walking is "like he's in outer space". He doesn't have any real balance or center of gravity and is constantly bouncing himself off of things.
The next thing they noticed is how easily he frustrates. The smallest little thing throws him into a screaming fit. More often than not it is a high pitched, piercing, screech. He has no other ways to communicate, I get that. He doesn't understand how to ask for something, not even how to gesture for it. He just screeches and screams until we stumble upon the right answer. I already knew that part.
Peter flat out refused to participate in any of the games and tests they were trying. The specialists figured it was because they are unfamiliar people, but I realized without even being told that he never participates. I didn't fully see that until yesterday. He didn't behave any differently during that evaluation yesterday than on a normal day.
Peter has the ability to understand spoken language of a 5-7 month old. I didn't believe this one. I was sure they were wrong... until I tested it out myself. The results of my morning of unofficial tests proved to me that although we KNOW he can hear, you would swear he couldn't. If you visually prompt him (such as holding out your arms while calling him to you) he will respond, and usually favorably. If you just call for him and give no visual indication of what you expect, he doesn't seem to realize that you're talking to him.
As parents, I think we subconsciously see what works for our children... and we make adjustments for that without ever realizing it. In his case, I think subconsciously I knew he didn't understand and I made adjustments by adding visual cues. This hasn't hindered him.... at least he has SOME way of understanding what I need/want/expect from him.
I am doing my best not to sit around and wonder what I did to cause this. I know I didn't cause this. I'm stressed... extremely stressed... given what  their daddy and I are trying to accomplish with Peter, Jolie, and Beth. All three of them have special considerations, drastically different needs, and what seems like near constant appointments. Add into that a newborn and his appointments... and it makes for complete chaos. I'm also dealing with school and work... so yeah. I'm stressed.
It's okay though. I still stand by my perfect imperfect children... and I wouldn't trade or change them for the world....