Updates

It has been completely and overwhelmingly busy lately... but looks like it may be finally settling down. We still haven't had any luck on finding a provider for Jolie... and now Beth's doctor thinks she would benefit from a counselor but even less luck there. That's the one area I just can't seem to figure out.



Peter had his appointment in Worcester about his male issue... and got the all clear. Nothing at all wrong with his testicles, which is a good thing because I was really nervous about the possibility of testicular cancer. The pediatrician should seriously stop telling me anything so I have nothing to stress over....lol. We're mailing out his packet this week so we can get him seen by the neurologist and see what's up with him.

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.

Joelene

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 out...lol.... 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.

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.

Peter

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....

Happy Memorial Day!








I talked to the girls today about the meaning of Memorial Day. Not sure it stuck at all...lol... but I tried.



So this begins the busy week. Wednesday a lady comes out from Early Intervention to get the paperwork settled for Peter and then they are coming to evaluate him on the 23rd because he isn't speaking yet. I'm honestly not sure if he's just late or if something isn't quite right with him either. I'm honestly not going to be surprised if they tell me he's on the autism spectrum too. I think the powers that be have decided that all of my children will have some issues. This is okay with me though as long as I can get them what they need and help them grow to be the best they can be.These kids are far more important to me than anything in the world and even with their weirdness they are absolutely perfect for me. I guess its a good thing I find imperfection to be perfect =)



Right now I'm sitting outside on the deck and they are playing around me. Its about 70 degrees and sunny... and wonderful. Right now autism, ADHD, behavioral issues, refusal to talk, pediatric urology issues, and umbilical hernias are a distant memory. They are just kids, free from labels and problems, having a good time. There will be time for all that later.



Its a nice day... a relaxing day...



We are perfect =)

Silly children

The girls played outside this morning with paper airplanes. My mom and I decided it would be a good time to get the baby out and let him run around on the deck. With him came his two protectors...lol. I've done a whole lot of nothing because there's just no desire to do anything. The new baby is moving a lot today and it hurts my back badly. Tomorrow is 37 weeks and I just can't wait until the 26th of April gets here. Seriously... I need to be done with this.