Our history...

We have a long standing history with Elizabeth and her voices.

When she was 4 she had a full scale meltdown. Anyways, she came home from school hysterical. I can still see her curled up in her daddy's arms sobbing her little heart out. She kept saying, over and over again, that there were voices in her head and if she didn't get them out she'd never be able to talk again.

Later that year she had this grey Tshirt. Every time she wore the grey Tshirt she would say her name was Jamie. This is normal pretend play but at the time she didn't have any real pretend play skills. This passed eventually and I really didn't give it another thought. Both of these events prompted me to seek help for her but she was over 3 so it wasn't an Early Intervention thing and every place I tried said they didn't deal with children so young. The few people we were able to talk to all said it sounded like pediatric schizophrenia. We never followed up because eventually the behaviors seemed to fade.

Throughout all the time Beth engaged in fairly consistent self harm behaviors. She'd bite herself, hit herself, bang her head into walls and scratch herself. As she got older she started talking about throwing herself in a dumpster, shooting herself in the face, and running away. This past summer she started eating paper when stressed, pinching her brother and sister when she was stressed, being overall defiant.

This September she had a massive meltdown involving voices, hallucinations, and the whole works. It lasted for hours. She talked about it for weeks afterwards but with no sign of fear or stress.

The last few weeks here have been so intense with her voices/hallucinations. They are starting to appear daily.

Mittens

I am a mitten making fool. Love making the mittens. I could seriously make several pair a day if life would just stop interrupting me....lol.

Yes, that's today's post.

Jamie, Clara, Carolese, Mia, and Elizabeth

Who are these people?

They are people who live in my child's head. In the kitchen this morning she was having a conversation with "Mia". She was discussing with Mia how her day should go and what she'd like to do. Apparently Mia had some ideas too because she was telling Mia they would have to wait until after school to do the things Mia wanted to do. 

I asked her about Mia. Mia is a girl in her class at school. Mia liked Beth so much that she decided to move into Beth's head. Mia still lives with her parents and goes to school. Both "aspects" of Mia are real. Beth went on to describe Carolese who is another girl Beth knows from school. Same situation. Clara is from the Nutcracker ballet. Clara moved in also. Beth said that both Clara in her head and Clara in the Nutcracker are real. The problem with that is that Clara is a make believe character in both situations.

Jamie. We've heard about Jamie before. When Beth was three years old she talked about Jamie a lot. She didn't really have any pretend play skills, but we figured Jamie was an imaginary friend and left it at that. We assumed Jamie went away when we didn't hear more about her, but apparently Jamie never left. Elizabeth is her, but not her. 

Confused yet?

Yeah, me too.

I asked a lot of questions. Gently. When she became defensive I assure her that I believe her and just want to understand. She was open, she answered as best she could and explained as best she could. She talked about how she doesnt want her teacher or her friends to know and I told her she doesn't have to tell them. I reminded her that I love her more than life and would always believe her and she can tell me, daddy, and grammy anything. 

She took all that in. Silently. And then...

"Mama, you know my brain works differently than everyone else's." 

Of course I knew that. That's kinda how I explained autism to her. I told her that.

"No Mommy, I mean my brain has advanced technology. Technology no one else has."

She wasn't able to explain that.

Soon after this her daddy woke up and she decided she was going to tell him about Mia, Clara, Jamie, Carolese, and Elizabeth.

Except she suddenly became silent.

"You tell him, Mama, I forgot."

I prompted without leading. She mumbled out their names. We talked about how we will always believe her and support her. She started dancing around like a weight had been lifted off of her and went off to school. 

Without her backpack.

Did she make it all up? Was her imagination in overdrive? Does that even matter? Regardless... it became in-your-face clear this morning that she's unable to separate pretend from real (I quizzed her using book characters and TV characters).

I just want....

To be warm.

I understand that I live in New England, but I see snowflakes.

It's October. This is sooooooo unbelievably far from okay with me. My fingers are freezing. Might be looking up a crochet pattern for gloves soon. I can't crochet in gloves. This is going to be a problem.  =(

Anyways, cracked rib is healing. Today is the first decent day since Monday. I'm not fooling myself though, I have a long time left to heal. I'm just making sure to keep myself medicated and not do too much.

As for my beloveds....

Jolie's learning to read! She loves it so much and its so exciting for her! She went apple picking with her class last week and loved that too. She adores school and everything about it. She's also been a HUGE help since I  was added to the injured players list. She's my "little mama". Her hair is finally long enough for a pony tail again... I'm praying we're done with the "cut my own hair" phase.

Peter is a monster. No, really. He runs around yelling "RAWR". A lot. He gives great "yummy kisses", amazing snuggles, and is fun to share a blanket with while watching cartoons. He doesn't always make sense though. Like right now. He just told me he wants "rainbow fish". No idea what he's trying to get at.

Beth is far too old to only be 7. She's a near constant drama queen. Someone needs to be the drama queen. I mean its just not right not to have a drama queen in the family. And she's damn good at her chosen role. She's in love with science, so I think we're going to start doing some simple science experiments on the weekends. She'll love that!

Monkey is my giggler. Right now he's at the stage in life where everything is so funny. And his laugh is infectious. I can't help but giggle with him. He's not really in a snuggling stage and that sucks because I love snuggling with him, but watching him explore everything is crazy fun too. He's talking up a storm... and trying new foods constantly.

That's my update. Now I'm off to decide what I'm crocheting tonight. I think I'll work more on my flower. I really love the flower cushion and can't wait to see how mine comes out!

A post in pictures....

What I've been up to this week....

Let me start by saying that on Monday afternoon I found myself in extreme pain after coughing.... diagnosis.... cracked rib. NOT fun. As a matter of fact, incredibly painful.

Before that (and after, when I can actually function on the pain meds...) I've been crocheting. All of my ideas have come from various places on the internet... so far I can't seem to come up with my own patterns but I think I may in the future.  =)

So I started with this : 

I'll help you out here... it's a unicorn. It doesn't photograph well but its cute as hell! I made one for each of my girls and they absolutely adore them! They're quick and easy to make, and the pattern was free, which makes me happy!  =)

Well that was fun, but I wanted to do something different. A quick search for free patterns turned up this:

I made it (that's my neighbor's house in the background there..lol) and loved it. It is way too cute. But the kids wanted it and it didn't seem fun enough.... so ^ that turned into this :

 The face was all my idea and all my creation. I was quite proud of myself...lol. But there was a problem. I had one adorable pumpkin and four adorable children. I solved that pretty easily....

 There. Kids happy, problem solved. What to do now?

I decided to look around and see what I could come up with. I stumbled upon this: http://crochetingthedayaway.blogspot.com/2011/10/tunisian-crochet-how-to-basic-tunisian.html and decided to give it a try! The results were :

It was way too much fun! I really loved doing it. I could have done it all day, but I bore easily. On to the next project, but I didn't know what to do. Some clicking around here http://crochetingthedayaway.blogspot.com/ led to here http://attic24.typepad.com/weblog/ and I discovered this http://attic24.typepad.com/weblog/blooming-flower-cushion.html. This was a MUST do. It's in progress :

So that about covers my recent crochet journey. Kids are doing well... They're loving my crochet journey because they get cool stuff!

Cold!

According to weatherbug it was 32 degrees out this morning.

I hate this!

I know, I know. Winter is coming, same as last year, blah blah blah.... I still dream of living somewhere where the coldest it gets is 60 and the warmest it gets is 70.

Anyways, I crocheted the kids all pumpkins yesterday. They LOVE them! Made Holly a butterfly... it's ummm... interesting.

Did I mention that I'm freezing?

Monkey and Bubba are coughing and have runny noses. Poor boys.

On a good note... they're actually playing together this morning. Totally functional play, and nicely too!

Finished!

It's finally done! 

It took over a year, and right now I'm snuggled up on the couch with my masterpiece. I was going to wash it but right now its keeping me sooooo warm! 

Guess its time to make more stuff animals. The kids LOVE the dragon I made last week.

Today was supposed to be a karate day.... but my lower back and my knee are not in any shape to go anywhere. I'm still waiting on the MRI to be scheduled. My back is more than likely arthritis and the bulging discs but my knee is seeming to be more serious. I went through 6 weeks of PT and made great progress but the evaluator says it is most likely a cartilage/meniscus injury. I was referred to an ortho who confirmed that those are her suspicions too and now I'm waiting on the MRI to confirm. My primary care said if it is in fact some time of injury I'm going to be looking at knee surgery. Not at all looking forward to that but trying not to get ahead of myself.

So this morning while I was trying like hell to entertain them while not hurting myself I decided to play the episodes of Sid the Science Kid that I had recorded on our DVR. The three older kids were engrossed in a matter of minutes. The episodes we watched were on inertia and elasticity. The girls really learned and are able to explain back to their daddy what they learned. This led to me printing out worksheets for the kids to do. Joelene did almost 10 math worksheets in less than an hour at a first grade level with only 1 wrong answer. And she was working by herself. She did some letters worksheets too but she doesn't like letters as well as she likes numbers.

We're having a good day.

Friday night.....

As one son screams, two girls yell, and the second son looks on patiently..... I realize that this might be a great weekend to do some picture taking. And maybe some crochet animals. And finish the book I'm reading. And work on the afghan I've been crocheting for a year now. And... well, you get the point.

How does chaos bring about these thoughts? No clue, I thought maybe you'd have the answer.

This has been an insanely long and busy week! Beth started her after school program and she absolutely loves it! The girls are still going to karate and I'm slowly seeing some real improvements. They are building back the confidence they lost two weeks ago. Monkey-doodle has been chatting up a storm and running around like a crazy person.... and I'm loving every minute of it!

Peter had a rough week in school. Something (no clue what) happened at the end of last week. Something at school scared him horribly. Like to the point that he was simply never going back, in his opinion. All he could tell me was that school is scary, but no details. I called his teacher, I talked to the special ed coordinator, and came close to talking to the principal. No one could pinpoint what it was. A week later he still insists he's not going, but has a good day once he gets there.

Princess Jolie went apple picking with school today and had so much fun! I was seriously starting to consider the possibility of homeschooling but when I asked the girls if they'd rather learn at home or at school and they were quick to answer that they'd rather go to school.

This weekend we're doing karate and then we're going to spend the weekend hanging out together. Some yard work, movies maybe, and just celebrating each other and the strengths we all bring to this family. They're buttheads sometimes but I adore them.

Disappointments

Probably one of the hardest lessons a child can learn is how to deal with disappointment.

Last night at karate both girls were gently told that they weren't ready to test. In the year we've been going to karate this has never happened to them... so needless to say they were shattered.

I wasn't there. I was at home considering getting ready for Peter's Open House (which I did not make it to) and nursing a massive migraine. My sister was there with them. I hate that I wasn't there... but I know I wasn't in a position where I could have handled that. I handled it as best I could by phone.

Let me be clear about something before I go on.
The karate studio made the right decision. I firmly believe that a child should not be promoted until they can handle the material. My children are no exception to that. At no point was anyone at the studio mean or harsh with my girls. They handled everything with the grace I have come to expect from them.

When I first talked to Beth on the phone she was hysterical and kept sobbing "I'm so upset, Mommy" and "I'll never get my confidence back, Mom". (The fact that she could, and did, express that pleased me to no end). I wasn't going to put her through this... we weren't going to quit karate but I was going to have Holly take them home but my brave girl didn't want to go home. She wanted to stay and I was leaving that choice totally in her lap. I think just knowing that I was going to support her decision either way helped her be strong.

I talked to Jolie on the phone too and although upset she was calm and she wanted to stay too. Holly had told me that she cried a lot but did calm down (it didn't hurt that one of the staff gave her Cheez-its). They decided to stay and one of our favorite teachers, Mr. B, worked with Beth for a little bit on her material.

When they got home I was greeted by two little girls with puffy and red eyes. I hugged them both tight and Beth was still disappointed but she understood. Jolie, on the other hand, lost it. She started sobbing and yelling, slamming doors, and swearing she was done with karate and never going back... just downright hysterical. I called the girls therapist to let her know what was going on and she asked me to have them draw a picture of how they were feeling about the events of the evening.

The results of that activity:

{image removed due to child's name on it}

Beth identified her emotion all by herself. She said she felt better after drawing it, which I know was part of the reason for the exercise. I know it was to help them get the emotion out. 

When I asked Jolie what feelings her picture was showing she said "mad". She isn't much better today. It's her 6th birthday and she's been complaining of a stomach ache. She said she's still sad and that her heart hurts because she just wants to be good at karate. She doesn't want to quit anymore.

My heart breaks for my babygirl. Beth handled this so well and I told her how proud I am of her for sharing her emotions, for talking it out, and for not giving up. She seemed to glow under my praise and I'm positive that helped her understand that it's perfectly alright to be upset and that we are here for her to help her through these hard moments in life.

Joelene is still struggling. She said she doesn't want to quit anymore, which is a good thing considering that I wasn't going to allow her to. I don't want my children thinking its alright to quit something when it gets hard or doesn't go the way you want it to. As hard as this is for them, and for me, I want them to remember that it hurt but they overcame it. I want them to be proud of the work they put into it and to know that they may not succeed on the first attempt at something but that they can succeed if they don't give up.

The girls are off to school now. 

Jolie's parting words as she walked out the door....

"Hopefully I don't get hurt today."

School has begun!

Pookie has started the 2nd grade!

And this time, Mommy is prepared. It's been a long while since I've updated so let me try and get it all down. We had a crazy summer. Pookie was entirely stressed most of the summer. She started eating paper, pinching herself, pinching and kicking Peanut and Bub, and went back to expressing desires to hurt herself.

We were at a total loss as to what to do so I talked to her pedi and the pedi put her on Prozac. I know, a tough choice. I struggled hard with the choice but I really feel like I made the right decision. In addition we added some home based therapy and ended up with a therapist that we all adore. She has since calmed down and is handling things so much better. She's adjusting and new social skills are emerging every day.

This past week she, for the first time, was able to pick up on non-verbal cues of nervousness coming from another child and apply an appropriate action to help with the nervousness. This happened at karate.... and although I missed it someone caught it on video. We now have video proof that the ability to pick up on non verbal cues and empathy are alive and well inside her. She's simply learning how to apply it.

Princess Peanut has started kindergarten... and she's loving it. She's going full day and sometimes comes home exhausted but has a blast! She already knows her letters so a lot of it is review so far, but she's loving it none the less.

Bub is turning 3 and entering the public school system soon. I'm really going to miss his ABA therapist. He's doing amazing.

Monkey is... well... Monkey...lol. Talking up a storm and walking everywhere!

My heathens....

A fun time was had by all!

Enjoy your weekend!

Thinking Out Loud (Sort of)...

     So the school thing.... temporarily (or maybe permenantly?) on hold. I've been thinking a lot about that today. I don't like how it feels to not keep going but I know right now it is the best decision.... especially that specific degree. I'm logical enough (most days) to know that the career path wouldn't work with my chaotic children. The thing is... I hate change. Even change that is for the best. I hate starting new things, ending things, new places, new routines... all change really. I don't know for sure whether this stems from my rather severe anxiety issues, or whether this is something entirely independant. Something to think about....

     Back to the school thing. That career path just wouldn't work. I knew that. I knew that long before it was pointed out to me several times. Right now I can't see a career path that would work. I have two kids on the autism spectrum, one with emotional/behavioral issues, and a baby. I can't afford daycare (and would never launch my crew at a poor unsuspecting daycare provider). I was thinking today that maybe I could work on a degree in child psychology. Even if I never use it for a career path it will help me understand my children and help me make better decisions for them (and with them). Once they are all in school maybe I could work for Early Intervention or something like that.

     On a completely different note, today with Joelene was a complete nightmare. Jolie has been spending a lot of time alone everyday in her room. Normally I don't mind this but its starting to get excessive. The weather today is amazing so I told her to go outside... and that's when the nightmare began. Peter was out playing on the (newly) enclosed swingset/sandbox and I told Jolie to go play with him. My mother and I were right on the deck so it wasn't like she was alone... but she lost it. She screamed and cried for over 4 hours. She hit, pushed, screamed, sobbed, was unbelievably hysterical over a fear of bees. I think we saw 2 bees the entire time. When logic prevailed she began her screaming again about she didn't want to be here and just wants to watch TV... which was the actual problem to start with. We made it through the tantrum... and I am happy to report that she is playing outside happily by her own choice right now. I guess it seemed like a good choice seeing as how I flat out refused to turn the TV back on today...lol.

     Right now Monkey is napping and the other three are outside playing. I am absolutely loving it!

Oh! Peter rode a tricycle today... I didn't get any pictures but I will soon!


  

That's awful! I'm so sorry!

I was reading some autism related blogs today and in one they were discussing the stigma that comes with being diagnosed with an ASD. It's not nearly as bad as the stigma that comes with an emotional disorder, but it's still commented on in a negative fashion on a regular basis. Now don't get me wrong, I'm actually very used to hearing about how bad my genes are, how awful it must be for me, and how sorry people are that I have two autistic children.

Now that being said....

About three days ago a nurse from Boston Children's called to confirm some details about Xander's upcoming surgery. She was going over family medical history and asked if anyone in his immediate family had any neurological disorders. When I asked what would count as a neurological disorder she listed autism as an example. I told her that two of his siblings have been diagnosed with PDD-NOS. The line went silent and then she said... "That's awful! I'm so sorry!". This actually shocked me into silence. Most of the time when I hear this its from a "well meaning" family member, a stranger, one of the kids' teachers... but I've never heard it from a member of the medical community. Most of the time I easily respond with "I'm not sorry, they're perfect.". Not this time. This time I sat there for a few seconds speechless. We continued the call with no other shocks...lol. 

Don't get me wrong.... she was awesome. She was so thorough in her explanations that I got off the phone truly comfortable with the entire process. I don't see what she said as something bad, something wrong, or a negative mark on Xander's surgery experience. As a matter of fact I had put it out of my mind and forgotten all about it until I read that blog this morning. 

I think on of the things I'd like to see for the autism community is for reactions like that to stop. Seriously people... you want to know how to help people with an ASD or parents of a child on the spectrum? Stop those reactions. Believe it or not, not a day goes by that I don't wonder if my genes are what caused my children to have these challenges. Parents like me don't need you to point that out. We're reasonably intelligent people, we know. Personally, I feel blessed most days. 

Good Morning....

And to think I took off his shirt before he started eating because I didn't want his shirt to get dirty.....

Yep, so far this has been my morning. The girls are out of control and nothing is making Peter happy. Xander, however, is looking on thoroughly amused. 

Mornings like this make me want to crawl into a hole...lol.

Family

 I know I need support. Support outside of the ABA, Speech, OT, PT, and every other therapist you can think of. I wish, and I mean wish, that we could go somewhere, attend events, and socialize. I kind of miss summer cookouts, birthday parties, and the like.

This is on my mind today because we have been invited to my step-brother's daughter's first birthday. Yep, this makes her my niece. I've seen her twice since she was born. I can't really consider that close family. I have one sister, 4 step brothers, and 3 step sisters. Between them I have at least 12 nieces and nephews.... and can't say that any of them (except maybe one) see me and mine as family.

This makes me sad. I know a lot of it is because my priorities are insanely different than the rest of the "family"'s. They, for the most part, do not need to consider what the ultimate effect is going to be on two of their 4 children. They don't have to know exactly how large the event will be, whether it will be indoor or outdoors, if there will be a quiet area, or how long the event is expected to last. They don't have to worry about judgmental looks, odd behaviors, or social inappropriateness. Yes, this all happens. One way or another it usually ends up getting back to me. I brush it off, but it still hurts to know I will never have a true family atmosphere for my kids. They will be tolerated at the proper times... no one will dare be outright mean to them, but they won't be understood.

This may be my fault. I have systematically declined every invitation I have received in the last 3 years with the exception of two or three events. Each of these events have confirmed that I made the right decision declining the others. In all of the cases I didn't decline I spent the majority of my time ignored and left to chase my kids. I can chase my kids and be ignored at my own house... it's not at all fun doing it at someone else's house.

In the end I guess what it all means is that I want to go places, I want to socialize, I want my kids to socialize... to have friends, to have a support system. I want to socialize with people who aren't going to talk about my kids in a negative light at the end of the day. I want a family.

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.