Waiting...

I've been waiting to post. I have a big huge idea for a post that I need to do, more for me than anything else. Really I write for me. When I do write.

This last week or two has been kinda rough for me. I'm 7 days away from a full month of not smoking and I ditched the horrible Chantix. I hit a point with the Chantix where dying was starting to sound like a beautiful and wonderful idea. That day I knew I had to stop. My girls are incredibly proud of me for not smoking anymore. I didn't realize how much THEY wanted me to quit. Their excitement over me putting down the cigarettes is reason enough to stick with it. I don't want to disappoint my kids if I can at all avoid it.

See, I haven't always been a great parent. I don't even know that I'm a great parent now. What I do know is that I have improved exponentially since the early years. In the early years I was overworked, overtired, and overwhelmed. My girls had their needs met. I worked long and hard hours, but emotionally I just wasn't invested or present. I couldn't be, I couldn't find time to be. I worked 45-60 hours a week and was lucky to get 4 hours of sleep a night. I wasn't taking care of myself physically, mentally, or even emotionally. I merely existed. I followed every step given to me by every therapist and doctor, faithfully, no questions asked. I truly believed I was being a great parent.

Fast forward a few years... it really wasn't until 2010 that I started to realize that I was doing things all wrong. That I really liked the Xanax prescription my doctor gave me a little too much (okay a LOT too much but that was a secret). I truly believe in many ways that Xander saved me. Saved all of us. I loved Xanax, but I loved Xander more. The night pregnancy test came back positive I stopped. I couldn't have done it without the support I was blessed with (and hours long phone calls) by two people who have never ever given up on me even in my worst moments. A lot more happened... we're just going to fast forward again.

So now we have this baby and we're desperately fighting to get services. Beth is over 3 so EI is out of the picture and there's NO ONE willing to help. She's too young for everywhere we try and the few people that will see her tell me they are pretty sure she's schizophrenic and they can't handle that in a 4 year old. Joelene is busy destroying everything she can get her hands on, Peter won't talk. Hell, he'll only scream. For hours. Every day. We start evals for Peter and my job says "Sorry, this isn't working out."

THAT is where I started to realize that I wasn't a good mother.

And this is a good place to stop because this is going to lead into where I'm headed next.

It all falls down....

I have been unbelievably quiet.

Yep, this is pretty uncharacteristic of me.

I'm ready to write again. So lets recap, shall we?

In November of last year, when I was semi-consistently blogging I was working full time, working on a college degree online full time, struggling to get Bubba's ABA therapy set up (while not letting the change in my routine kill me), working with a psychologist for Poohbear, looking for a pychologist for Bean, and keeping a close eye on Monkey.

Not a lot going on there....


I had been warned several times by close friends that I wouldn't be able to keep that pace long. It turned out to be true. I failed both classes, my back and neck started hurting with really no explanation, my blood sugar shot up over 400, and my blood pressure refused to leave the dangerously high range. I've been out of work since January and its looking like I may lose my job.

On the kid front not much has changed. Bubba gets his ABA about 15 hours a week (10 hours less than ideal but the state cut the budget... gotta be happy for what we can get). He also has group therapy twice a week, speech once every other week, and consults with OT and nutrition. Monkey is now seeing early intervention for some concerns about his expressive and receptive communication so we have that once a week now also.

We no longer have a decent therapist for Poohbear... and we never did find someone willing to work with  Bean.  We had Bean evaluated by the school system and although they saw quite a few concerning behaviors they were unable to accept her for early entry. She starts kindergarten in the fall.

I took Monkey to the doctor this morning for his well baby visit and it turns out that he has 2 bad ear infections that I somehow missed. Dr and I discussed Bubba's violent tendencies and she is calling UMASS to see if they have any suggestions on how to handle a very violent two year old.  Monkey has a specialist appt tomorrow for his hypospadias (at 8:30.... in Worcester..... morning traffic is going to be so bad).

So no, not much going on.

Tell me something good....

...or how about I tell you something good....


Peter waves and says hi! Functionally... like he really means it! Yay!


During his first eval with early intervention they told us he had receptive communication (his ability to understand us) at the level of a 5 month old. I was sure they were wrong... but struggled with them being the professionals and all.

But he understands. As he gains more confidence and starts exploring more sounds and gestures he's proving everyday that he really and truly understands!

I'm in love  <3 p="">

Lots to update!

I'll start with the meeting with Beth's teacher.

I believe Mrs. B has the best of intentions. I believe she genuinely wants what is best for my child and I really appreciate that. I also believe, however, that 5 weeks isn't long enough for her to know better than I do. She agreed to the meeting and she did listen... and she did come up with a fantastic idea of having Beth journal when she's upset. She admitted that Beth is emotional but also believes that it is normal for first graders. I agree with that statement... first grade is hard and some kids really do have a hard time adjusting to it.

Here's what I know...

I know she didn't feel that burn. How do I know this? I know this because I've lived with her for 6 years. I've seen her reactions to injuries. I once saw her have an outbreak of hives so badly the pedi had a hard time telling what they were and she never even flinched. I understand that she told the teacher it burned when she was questioned about it. She's not even the one who told the teacher... it was her classmates. Let's go over real fast what really happened....

She ran her hand over the pizza warmer. She felt a warm sensation. One of the lunch aids saw this happened and looked at her hand and told her she was burned. They sent her to the nurse's office and the nurse most likely made statements regarding how it must hurt, and how they should run it under cold water to make it hurt less. She went back to class where kids saw it and told her teacher that Beth got hurt. All of this resulted in Beth realizing it must hurt.

So no, she did not feel that burn and arguing with me about it is not going to change that fact.

I know she is overstimulated during school. I understand that the teacher doesn't see this. I absolutely get that she is perfectly behaved and shows no signs of overstimulation (that the teacher can pick up on) at school. But when she gets home she is overstimulated to the point of hurting herself. I double checked with a fantastic child psychologist... this is normal. She's storing up all of her anxiety, confusion, and otherwise negative emotions for home.

Yes, I think I found Beth a psychologist. I already really like this woman. Beth's initial appointment is 10/25. Yay for that!!



Peter's eval is Monday.... if we can get a diagnosis we will start ABA therapy through Early Intervention not long after that. We definitely need this diagnosis... he needs the therapy.

Jolie had her screening at the preschool today. No idea how that went... will know more next week.

=)

Small Update

Peter is cuddled up on my bed against the wall and its so freaking cute. Sometimes I'm really irritated that I started him co-sleeping... and other times I'm insanely selfish and thankful that he's snuggling against me when he's sleeping. His eval is next month... finally.




His night terrors are awful. We've had a calm few nights but they kill me. I'd give anything to stop them. His frustration level is so high at this point that he's all out violent. He bites, hits, pushes, screams, slams his head repeatedly into doors, hardwood floors, tables... anything really. Watching it is so insanely hard. I won't discipline him for his tantrums or violence. Not now anyways. He needs an outlet for his frustration and he doesn't seem to understand pain, feel pain, or care. I don't care if it makes me a bad parent... he can beat me up all he needs to, for the time being.



Once his eval is done next month hopefully he can start getting ABA therapy through EI. The only part of this that really bothers me is that the woman in charge of ABA is the supervisor, Jill. She's the one that we believe had DSS called on us in the first place back when Beth was getting services.



Tomorrow I need to call the school system about my Joelene. I need to see if I can get her evaluated through the schools to see if she can get services. I have a 7 page document here done by a psychologist a few months ago basically stating that she needs help ASAP. Its too long to go into now but I'm going to so I can at least have it all documented in one place.

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 =)