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="">

A picture blog!

I've been meaning to post...

No... seriously... I really have!

I even started drafts! There is so much to write about, to document, to share... but lets face it, I'm overwhelmed. Since my last post we've had Beth's graduation, Jolie's PT eval, Peter's accomplishments and setbacks, and Xander's huge accomplishment! A lot of this is great stuff, and I still find myself staring at the screen. It's not that I can't explain what happened... anyone with an active memory can. It's more like I can't find the emotion around what happened and I don't want my own blog to read like a TV owner's guide....lol.

Beth's karate graduation was a success and a disaster all at once. I'm so proud of my pookie... but she struggled hard. There were far more people there than we anticipated... so we didn't prepare her well. We brought all of the kids.... Peter wasn't having all those people around him. Nope. Not even close.  So Mommy and Daddy took up post outside (extremely large glass windows made it so we could keep Peter from the crowd and still see Beth! Yay for glass windows!)

It was just too much.... too many people, too much noise, and not at all prepared....

After several trips outside (where Mommy and Daddy were keeping Peter and Xander entertained).... she made the choice to try again! Grammy was taking pictures... and she kept looking over to make sure Grammy was still there.  =)

She made the choice to demonstrate with Mr. Victor... all by herself!!

She's exhausted. It's been a long, long, long night.

But she did it! She made it through the entire graduation (with several hundred trips outside)!!!

For inquiring minds who really want to know what the other two kiddos were up to while we were soothing Pookie and Bubba....

 Princess Peanut (Jillianne) sound asleep with Papa watching.....

Prince Monkey snuggled close in his carrier and watched the festivities.... from outside. He really wasn't interested in the noise either.

So... what have we learned?  I think we've learned that we're not all going to be able to go to karate graduations. Jolie is graduating to yellow belt on 12/17, and I think maybe Daddy and I will take her by ourselves.   =)

Sometimes it all falls into place.....

The appointment tonight with Beth's new psychologist was amazing. I really feel like we connected and were heard and we have found someone who wants to help our child. The entire hour was all of us talking. Beth demonstrated her stress and aggression when she was asked not to play with certain games. The psychologist feels that Beth fits the exact profile for Asperger's and really stressed that Beth needs a neuro-psych evaluation. We absolutely agree with her, but our bank account really doesn't agree. Neuro-psych evaluations are really not cheap and aren't covered by insurance in most cases. So... we're working on that. In the mean time she is going to start seeing Beth on a regular basis. She's going to focus on bio-feedback, stress and anxiety coping skills, and how to communicate her emotions. I like that option because I'm really not comfortable medicating her... not until we've exhausted all other options.

Jake has officially been diagnosed with PDD-NOS. Beth's therapist said PDD-NOS is really the "we don't know exactly what it is yet" diagnosis. Peter's behavioral pediatrician is really great. I really like how straight-forward she is. She is even willing to see Beth as well. Peter is going to be starting ABA therapy through Early Intervention on November 3rd. It will start out as 10 hours a week and over time expand into 20-25 hours a week. I know this is going to be the very best thing for us.... but re-arranging life for everyone in the house to accommodate that is already causing tension.

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.

=)

The world around us...

I've been doing a lot of reading lately... anything I can come across in regards to autism. I'm not new to parenting an autistic child. I am new, however, to parenting two children with global delays.

So anyways, I'm cruising the great world wide web and finding blogs written by mothers of autistic children. I find myself getting lost easily in their stories and tearing up at the challenging moments. I understand their words, their situations, and their emotions... and I absolutely envy the way they can tell their stories. These women all see to have a gift of words that I could never possess. They write with such eloquence and feeling. I almost feel like my writing is choppy and awful in comparison.

Okay with that out of my system...

I emailed Beth's teacher today.  I formally requested a meeting between her, myself, and my husband. As of this morning Beth could only name 2 children in her class of 22 and said they aren't always nice to her. She says she plays by herself at recess unless the other kids ask her to play... and sometimes she plays with the kindergartners. I learned all of this by simply asking if she enjoys recess. I try really hard not to put ideas in her head. I do my best to ask questions in a way that doesn't imply an answer. I really want to make sure that whatever is decided is what's best for her.

Last Wednesday my baby informed me that she wants to shoot herself in the face. I have no doubt that she knows exactly what that means, but no idea where she got the idea. We don't have guns in the house. She doesn't associate with anyone who does. We don't watch violent programs on TV and we definitely don't expose her to violence.  She hasn't said it since and really couldn't answer why she would want to do such a thing. I didn't push it. Maybe I should have... but she was so frustrated and hurting so badly already that I couldn't make myself push it.

Hopefully I will have this all down pat in time for Jolie and Peter....

Quick Rambling

1) Someone viewed my blog from Alaska... how cool is that? lol!


2) At some point today or tomorrow the books I ordered from Amazon... From Emotions to Advocacy and Wrightslaw about IEPs.... will be here. I fully intend to devour those books and write as much as I can here.

3) Peter turned 2! And is waving and seems to be interacting more! Awesomeness.... also going to blog about that in fully this week.

4) The school system is going to screen Jolie on 10/8! From there we find out what evals they are going to do and get that ball rolling.

Okay thats it for right now... working another 10 hours today..   =)

Peter and Beth

I've taken to just titling the posts with the kids' names I'm writing about. Lazy? Probably....lol.


Anyways.


Peter.


Last night I came home from work and Peter was launched into fit throwing mode. His daddy was in the process of changing a very messy diaper, which has been happening a lot more lately. I can't tell if it's his teeth, or whether it's something else, but its causing destruction to the poor child's diaper area. I talked to him and snuggled him while his daddy finished the diaper change... and then I snatched up my baby and rocked him close. He laid his head against my chest for the longest time just watching me with those big brown eyes. JD went downstairs to grab us something to eat and I snuggled my son. It was much needed time for both of us. I think Peter and I both had a rough day, and the snuggles were perfect.

 He fell asleep with his head against my chest, listening to my heartbeat. I wasn't ready to put him in his bed.... so I laid him down next to me on my bed.

You absolutely can't beat great snuggles....


Elizabeth.

I never actually finished my Beth story. I know it seems done, or long at least...lol.... but its not done. I just got off of the phone with the Special Education coordinator and she said she mailed out a new copy of the IEP 3 days ago to have signed but that the school should absolutely be using her current (apparently unsigned) IEP and not her kindergarten IEP. Hopefully this will be resolved real soon. The current IEP calls for speech pull outs which is supposed to help her learn how to interact and express herself, especially her feelings. This is imperative to her success in school because all of the disasters that happened last week happened because she couldn't express herself and couldn't understand how to interact in the situations she was placed in.

Last night while I was at work Beth and her daddy tackled her homework. Since I wasn't there I didn't see it happen personally but from what I hear it was quite the experience. She had to make a hat out of things around the house. Since JD does a lot of leather work it was really simple for him to work out a basic hat design out of leather. Getting her to sit still and cooperate to put it together was another story. It took them about 2 hours.

She's going to start having spelling tests soon and I'm completely worried about her anxiety level. Beth is very focused on being the best academically. She has a real issue with this and becomes entirely unwound when she feels others are performing better than she is. I haven't seen this happen at karate at all, but this behavior was present all last year and her teachers fed into it despite me practically begging them to help her learn that "Beth's best" is all we are after, not "overall best".

Elizabeth

Beth started school on 9/7. Ever since then the world has crashed every day at 3:50 pm. She's angry, frustrated, emotional, and mean. I know that what we are seeing is a window to how she feels inside, and it breaks my heart. Literally.

The first day of school was awful for her. I knew it would be. We gave her the social story they created for her and she had already visited the school. Her new teacher even mailed her a letter before school started. I was hoping this would be enough. It wasn't.

Somewhere along the lines communication failed. I had no idea I was supposed to send her with a snack. I don't have any kids older than her and I swear the school never sent anything. It would have been nice if they did because then we could have avoided the complete melt-down she had when she got home because everyone had a snack but her. We made it through that and she now has her choice of snacks and juice boxes to choose from every morning.

I was hoping that was it.

We really weren't that lucky. Day 2 was a Wednesday. I took Jolene to karate... my sister waited for Beth at the bus stop and brought Beth to karate after she had changed. When Beth got there she was very upset. She said someone in the lunchroom made her sit in another spot away from her class. She was getting increasingly upset as she told me that she got lost and a girl had to bring her back to her class because her teacher couldn't find her. Once I got the story out of her and calmed her down it was time for her karate class, so I sent her in and hoped for the best. Her karate instructors are fantastic with the kids, so I knew she was in good hands and I watched her closely. She did wonderfully.... until the very end. The class went outside and started a "stranger danger" drill. Beth has done this drill before, so I decided instead of waiting with her for her turn I would go to the other side of the car they had staged and was going to try and get pictures with my cell phone. And that's when it happened.

She hadn't really been paying attention. I think her emotional resources were spent for the day and she was just going through the movements. All of the sudden she decided it was her turn. A few of the other kids showed her where the line was and this was her undoing. She started crying and yelling about not wanting to do it any more. In a matter of seconds one of her fantastic teachers was right beside her talking her through it. By the time I got back around everyone and to her she was calm and just wanted to go home. The kids came to apologize and we went home.

I did everything I could not cry on the way home. I was overwhelmed entirely and had no idea how to deal with the school situation. When we got home I wrote a letter to her teacher.... which returned to me unread the next afternoon. I think this is about the time where I realized that we may not be dealing with people who understand special needs as well as I had hoped they would. I admit to being really lost. JD and I went to the IEP meeting, we saw the evals, we heard the discussions.... we got a copy in the mail and read it over and over again. Signed and sent back the acceptance slip... and then had no idea what happened next. I had, wrongly, assumed that we would get some kind of communication. Like maybe a chance to meet her teacher ahead of time... something. So I sent her to school on blind faith without fully knowing what to expect.
That was my fault. I should have made someone explain this to me in layman's terms. It was my fault, but my little one is paying for it.

So the following morning I made sure Beth understood that there was a note for her teacher in her folder. My cell phone rang right around lunch time and it was her teacher. She expressed complete confusion over the story I had written her in my note. She had no idea that Beth had been moved in the lunchroom, or that Beth had gotten lost. She said she investigated a little bit and found that Beth had been moved from her normal table because she got up to throw something away without permission. That placed Beth in a different line to go back to the classroom than she was used to. She said all of the 1st grade classrooms are in the same hall so Beth was never truly lost.  I know the teacher heard my sigh in response. I don't know what made me ask, but I asked the teacher to explain exactly what makes up Beth's classroom environment. She told me that it is a general education classroom (I had a feeling, but the IEP was vague), that she has a handbook on PDD,and that if she didn't have paperwork on Beth she never would have guessed that she is on the autism spectrum.

I know the teacher didn't see this as a big deal. I know, from the way our conversation went, that she can't figure out why this simple incident was enough to cause me to write in about. She probably already has me on a list of problem parents, but in all honesty this is a problem. A real problem. Elizabeth had no idea what was happening or why. None of the events that seemed so simple to the teacher and the lunch aids made any sense to her. She was purposely removed from a place she felt safe and placed somewhere else for reasons she was unable to explain.

The teacher praised Beth's coping skills because Beth didn't seem upset about it and didn't tell the teacher what had happened. This, to me, is not coping. This was her bottling it up and letting it fester all day until she was safe with her family, her comfort zone.

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.

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.