Sometimes I feel as if I'm drowning

I know I have been awful lately about updating this. I have been so busy being sick, and tired, running after the 4 kids, getting the older 2 ready for school, and dealing with the fallout that school brings. Especially with Anthony.

I feel as if I fell off the wagon a few weeks ago and have been running to get back on - and repeatedly missing it. I have been so stressed out and grumpy that I'm not being the wife, friend, or mother I want to be. I pulled back out my go to author, Dr. Sears, for advice, and am currently rereading "The Discipline book". I don't feel as if I've done the best job of gentle discipline lately. It's so nice to have affirmation that the way I'm parenting isn't bad, and a gentle nudge to get back on track.

Anthony can quickly make me want to bury my head in a pillow and scream as loud as possible. There are days I feel we need to walk on eggshells around him to make sure he doesn't have a meltdown. I talked to his teacher and told her his issues with TV and she replied, "Are you sure its not something YOUR watching at home - he's fine at school". Thanks lady. I'm sure. We don't watch TV when he's home. And his outbursts can come days or hours later, it's not always immediate.

I spent the first 2/3rds of his birthday party dealing with meltdowns and urging him to complete the task he was set to do hours prior to the party. All because Chris, being nice, let them watch a cartoon that morning while we got the house set up.

I don't even know where I'm going with this post, I just needed to vent as I am dealing with, yet another, meltdown this morning and Chris is at the gym and unable to help.

Laying it all out

I am the mother of a child with Aspergers and a Mood Disorder Not Otherwise Specified (NOS).

I have hesitated to post anything about this. Thus far I have only shared this with family (so they can have medical history for their children), and close close friends. I have this rule where I don't post anything negative about my kids or my husband, even in frustration. I didn't want to post this because I was afraid it was painting my child in a negative light. Then I realized - I am treating this just like I fear so many others will treat him once they learn that he is different. It's not negative, it's nothing to be ashamed of, and I need to stop treating him as if something is "wrong" and accept that this is who he is.

I always knew Anthony was different. From the time he was born something was just abnormal. He never cried. I'm not saying he hardly cried. He literally didn't cry for the first time until he was three weeks old. We weren't sure he COULD cry until then. Even as a newborn he wasn't a fan of being held or cuddled. He was much more content being by himself. I remember wishing so hard when I was pregnant with Anastasia for a child who enjoyed being cuddled (and I surely got that with her!).

Around his first birthday we started noticing other things. He would bang his head as hard as he could anytime he got upset. If we restrained him he'd bang his head on US until we let him go and then he'd find the hardest surface and bang his head over and over until he felt better. His forehead was constantly bruised and I would tell his pediatrician who at one point recommended he be tested for Autism. The psychologist only sat with him once, declared he was too high functioning, and dismissed us.

Around this time my other friends children began side playing. Playing along side another toddler, not necessarily playing with them - but they would happily play with the same toy or in the same area. We were attending weekly playgroups and this was the first time someone else noticed something was different about him. The kids would all be playing in the same area, and way across the room Anthony would be playing by himself. If the kids came to where he was he would leave and find some where else to play. Anytime there was more than one child present Anthony would separate himself from the group and play alone.

We knew he was quite smart early on. Before his second birthday he had taught himself how to spell, and write his own name. By his first birthday he knew all his colors, how to count to 20, his shapes, letters, ect. We chalked it up to him being the oldest and therefore having 2 solid years of one on one attention from the both of us. However, once he began pre-k - in which he was by far the youngest student - we knew that his intelligence wasn't just something taught to him. His teacher was astonished on the first day and pulled us aside to tell us that he basically already could do all they'd ask of him that year. There were kids in his class who couldn't say the alphabet yet. Of course we were proud of him! However, it became apparent that what he made up for in intelligence he greatly lacked in other areas. He wasn't like the rest of the kids in his class. He seemed much younger, and although was chronologically younger than most of them, he seemed extremely younger. His maturity, or lack thereof, was extremely obvious. We laughed it off as he was a boy and everyone knows boys are more immature, and he was afterall nearly a year younger than some. I knew, though, that this was more than just that.

When my friends would come by with their boys, all of whom were younger by a year than Anthony, it became harder and harder to ignore. Others began pointing it out as well. He just seemed so much younger than everyone else. They also seemed more into age appropriate activities whereas Anthony (who had learned to read at this point) would spend all day reading the kid encyclopedias and repeating incessantly facts about his latest fascination. Or he'd find directions on how to build a certain thing and follow them to the "T". There was no imaginative play, thinking outside the box, or playing with toys in ways that were different. A block never became a phone, lego's were never used to build anything that there wasn't a direction for. He never played "house" or any of those other games that children play. Playdates were always followed by major meltdowns as well.

Starting around the end of his third year were the morbid thoughts. Horrible morbid thoughts that you never would expect out of a three-going-on-four year old. He'd be perfectly content one moment and the next he'd be crying and screaming. When asked what was wrong he'd tell us some long tale about what he didn't want to happen, such as "I don't want a bad man coming through my window at night and cutting off my head" (this was an actual fear of his that came out numerous times). We couldn't figure out where they were coming from! We never let him watch gruesome TV, he was only allowed to watch Noggin or PBS. He wasn't reading anything that would give him nightmares. He loved to read but we kept him from the grown up books anyway. Without fail these thoughts would crop up a few times a week and we were left trying to calm down a child and explain to him how illogical that was. These moments I felt as if my heart would break, but I was also so angry. WHY can't he just see how those thoughts didn't make sense?! Why weren't the doctors taking us seriously? His pediatrician just kept telling us to tell him those thoughts were illogical, but it didn't seem to do any good. It didn't feel right, either. He was legitimately terrified, and didn't know why. His monsters lived in his head.

In Kindergarten his social awkwardness became so bad he began to get badly bullied. He also stopped doing his schoolwork, which resulted in loss of recess and center time - which further alienated him from his peers. Shortly after the school year began his teacher, whom we had requested, went on maternity leave. Her replacement was awful but as his real teacher was supposed to return after Holiday break we endured it. However, she decided to not return and so the substitute stayed on. The bullying got worse and so we met with the teacher to discuss our concerns. She was no help. She claimed Anthony brought it upon himself for not acting normal and if he would just act normal he'd be fine. She refused to give him harder work to do saying that it wasn't fair to the other kids that he was so above them. I should have given her an ear full, but I'm ashamed to say I didn't stand up for my child the way he needed me to. Instead we decided to homeschool him.

Homeschooling did well but we noticed he was drifting further and further away from the social skills he desperately needed to learn. His pediatrician finally took us seriously after he had a meltdown that lasted over four hours that we nearly had to have him hospitalized for. One of my scariest days as a parent was watching my five year old trying to hurt himself, and my husband having to restrain him. Anthony was hyperventilating, he looked absolutely terrified, and I could tell he wasn't really with us. I was looking up numbers for adolescent wards, and crying myself because I was so scared for him. We finally got him settled down and he spent the next few days in a manic state - hardly sleeping and pouring through a stack of books his size that he "had to get through". His therapist recommended we send him back to public school so that he could gain more social skills, so we did after Holiday Break. His new school is wonderful and he hasn't been bullied at all. He still doesn't have many friends, but everyone is nice to him anyway. He still has numerous meltdowns, nearly one a day at least. He's only had two serious meltdowns that had us worried about him being hospitalized since that one though.

A month or so ago, after being in therapy for 6 months, his therapist decided to have further testing done on him. This was for social IQ and intellectual IQ. As expected, his intelligence scores were in the 99% and above. For nonverbal memory and spelling he scored in the above range but not as high which they believe means he has a nonverbal block of some sort. Once they get everything else under control they believe these scores will shoot up to the 99% and above as well.

He is basically in a state of crisis because his emotions are so out of whack. It also came out in the testing that he hears voices that aren't there. This made me feel as if I got punched in the stomach. They don't believe his has schizophrenia yet, or bipolar disorder, but they do believe he has something which is why they diagnosed with him with Mood Disorder NOS. His therapist believes it is more along the lines of "Emotional Regulation Disorder" so we shall wait and see what further testing and therapy reveals. He was also diagnosed with Aspergers. This isn't something I'm terribly surprised about, given the fact that Autism was tossed around when he was younger, but I'm still in denial about it. I need to get over this, but I have a hard time accepting that my son has something that isn't fixable. Thats partly why I'm posting this. This is who he is. He is Anthony, an amazing gifted boy who loves superhereos and reading. He has quirks and he sees the world differently but that doesn't make him WRONG. I guess, having the labels of Aspergers and Mood Disorder, it's saying that there is something wrong with him. It makes it hard for me because both of those define so much of who he is and yet they are issues that have to be dealt with through therapy and other treatments. I'm having a hard time separating that from saying that who my son is is wrong.

Along with his therapy, Chris and I will be in therapy to learn how to handle all of this. They believe that his IQ is high enough that he can teach himself how to respond appropriately, and which emotions are used when. At the end of it all, regardless of what he teaches himself, he will always have Aspergers. So I guess this blog will also follow the life of a mother learning to accept that and deal with it.

This blog has so many paths, it feels as chaotic as my actual life.

Day - Get back on track!

My house was destroyed this weekend as 13 little, adorable, children ran through it for two days. I have only half-heartedly tried to get it back in shape, but today I did a good portion of it. I figured we would clean for 45 minutes and thats what we did. Amazing what a little family can accomplish in 45 minutes.

This was what my garage sale money went to

This is the new bin for my diapers. All of my diapers, minus the pile I'm giving away to friends, fit in here! I was surprised! Chris doesn't like the set up as much because he can't easily see what he wants - but I was tired of seeing the diapers spilling out all of the time. The little basket on top was given to me at Anastasia's baby shower! It holds the diaper accessories, such as snappi's, pins, diaper cream, and baby powder. I have to have everything in order. It took me a long time to figure out a way to make the colors work. There is a pattern there.

Here's Chris helping me set up for the yard sale

And my sunburned face. It got much worse after this picture was taken. My whole face blistered up. After a full day with neosporin on my face it is beginning to heal and most of the blisters popped.

MAJOR raccoon eyes! See how messy this room is? It needs a good cleaning. This room is the scariest of them all.

And this is the man who makes it all work in our house. We've been married 7 years now!

And just to show the rest of them off....

The Bear

Anastasia

Anthony

David

And.... Jovi!

hmmm

I totally had a new post on here but I don't see it!  Thats a tad frustrating.

Not much is really going on at the moment - or not much I care to share with the world anyway.  Some things are just better left to myself.  I'm preparing for wrist fusion number 2.  Some people think that since I know what to expect it shouldn't be so difficult.  It's the exact opposite.  The recovery has been awful! I'm not looking forward to going through that again.  I had never experienced that amount or type of pain before. I guess having your bones scraped out, broken, turned around, and then having a large metal plate with 6 screws screwed into your hand and arm is quite painful and has a long recovery.  The post swelling was absolutely awful, and I was sure my skin was going to burst open.  I guess that's a plus to having EDS, our skin stretches well to accommodate things like that.  I had my pre-op physical yesterday and the EKG came back abnormal.  The doctor thinks it was a fluke and I shouldn't worry but if the other guy he sent it to disagrees then surgery is off.  EDS can cause heart issues so of course I'm worried, but my Echo 6 months ago came back perfectly fine, so I'm holding onto that right now as a sign that perhaps this was a fluke.

My nerves are getting the better of me.  When I get nervous I tend to ramble on and on and I get a little frantic.  I noticed yesterday I'm beginning to ramble (and you can tell in this post) and I'm trying to channel all of that into something constructive, like cleaning or playing with the kids, or even exercising.

The Bear is doing well.  He's beginning to thin out some.  He has a neck now!  He's rolling all over and trying to crawl without much success.  He has also begun sitting up for about 30 seconds at a time.  Each milestone with him is so bittersweet.  He's not our last child but he is one of the last.  We've spent so many years just having babies and now that our family is ALMOST complete we are cherishing each moment a little more than we have in the past.

Anastasia is doing awesome in soccer.  She loves playing!  She is learning more and more each day and is always so eager to help with the baby or learn something. We really do hope that one day we'll give her a sister but if she ends up being my only girl I'll be so grateful that I have her.  She really is an amazing daughter.

David is all eyes.  That boy is a charmer! He is so masculine looking already too.  Anthony and Charlie are both pretty boys, but David... he's as cute as a button but there is no denying he is a boy.  He has never been called a "her" like the other two have.  He acts like a total macho man too.  He loves to build guns (ugh!) and shoot everyone, he loves to climb, and boss the dog around, and beat up his sister.  But at the end of the day he's a total mama's boy.  He's always up for a cuddle and snuggle where he'll wrap his hands in my hair and lay his head on my shoulder.  He is truly one of those kids who is either making you want to rip your hair out in frustration or you just want to love and kiss on him - there is no in between with that child.

Anthony is going through a lot at the moment and I don't feel comfortable posting it for the world to see.  He's an amazingly gifted child and astounds me daily with the knowledge he accrues on his own.  Homeschooling is going... well it has it's moments.  We are going quite relaxed with him and teaching him fundamentals and then letting him guide his own way.  Trying to be too regimented with him was causing him to refuse to work.  By giving him the ideas and letting him process it his own way he is retaining so more more and working so much nicer.  He wants to try public school out again next year, but we are hesitant.  However, we told him it was always his decision, so we may be working towards that goal around Christmas to prepare him to reenter public school next fall.

Day One of Homeschooling

Today was our first day of Homeschooling.  It went really well, and went much quicker than I originally expected.  Except for a few minor melt downs we had absolutely no issues either.  We started with independent journaling.  Writing and journaling are skills we are really trying to instill in Anthony, and so far he really seems to enjoy it.  For Anastasia we got her a sketch pad and she draws pictures during journaling time.  After breakfast (a nice primal breakfast of eggs and steak!) we moved onto Language Arts.  Anastasia seemed really disinterested in sitting still today so I concentrated on Anthony most of the time.  We began reading, "Stuart Little" today, and Anthony read aloud the first chapter.  He did amazingly well and only needed help on 2 or 3 words.  Afterwards I quizzed him a bit on comprehension and surprisingly he retained all he had read.  He then composed a short paragraph about the first chapter in his book log notebook.

He only misspelled a few words, which we then added to his spelling list notebook as a start for this weeks spelling list.

After Language Arts we had health.  The first unit study is about our bodies so we decided we wanted to measure everyones height, weight, hands and feet.  The kids weights really surprised me!  Anthony is now 38.5 lbs! Anastasia is 28.5 lbs (which is amazing, she's been 23 lbs forever).  David is now 19.5 lbs, so still not quite big enough to turn his car seat around but growing.  Our chunky baby, the only child of ours who has ever had baby fat and rolls, is now 10 lbs!  We figure he'll get super heavy and then stop growing like Anthony did.  I must be making cream this time instead of skim milk!

After Health we had music.  I originally wanted to start with the recorder but I haven't purchased them yet, so we are learning about composers instead.  Today we learned about Wolfgang Amadeus Mozart, and will continue to study him for the rest of the week.  This is where our major melt down happened.  After reading a short biography on him I gave Anastasia a coloring page of his face, and Anthony received a word search to complete.  Anthony didn't want the wordsearch, he wanted to color.  Out of 9 words he only found one without help, and 2 with help, before he gave up. Will keep in mind he does not like word searches, but I will still give them to him because I do think they teach valuable skills.

After Health it was time for Spanish, which is computer based.  Anthony wasn't feeling it today and didn't really try, resulting in only getting half correct.  So we will be repeating lesson one for a while.

Next was Science, one of the subjects I'm the most excited about this year.  Today was a really easy day for Science, basically an intro into this years subject and some journaling in his Science Journal followed by adding Vocabulary into his Vocabulary Journal.  Tomorrow we start our first lab using thermometers to show how certain objects conduct heat!

Then we had Social Studies where we just introduced our current unit - Geography.  We learned basic definitions for Latitude and Longitude, identified the on a world map, learned how to read coordinates, and discussed the equator.  I guess he learned a lot of this already by reading one of his encyclopedias, so we flew through this quicker than I thought.

Finally we had Math.  I showed him how to do the word problems, and gave him two sheets to complete.  He flew through them very quickly and got every question correct! I was so proud.

So far things are going smoothly, but today was pretty easy.  On days where Anastasia is more interested we'll be doing a lot of things with her as well which will make things a bit more complicated.  But so far, so good.

Here's Anthony working on his Language Arts journal.

Here's my homeschool shelf, and our dining room with the alphabet posters, and the "Mizzell Money" reward chart (more on that in another post)

And of course, pictures of the kids!  David playing with Charlie's playmat, he can't keep himself off! And David getting into the homeschooling supplies.

Anastasia dancing to her "Get Ready For School" CD

And some of Chunky Charlie Bear.  So cute, so sweet, looks like me, but has little baby rolls!

I have been dubbed, "The Mean Mommy!"

Anthony has hit this oh-so-wonderful stage.  If he wants something he promises to be mine or Chris's best friend in exchange.  When he doesn't get his way he yells, with his voice gradually getting louder, about how horribly mean we are.

Last night he wasn't behaving well at bedtime.  We let the kids stay up as late as they want, as long as they are in their bed and quiet.  Anthony uses this time to read, and he knows that he must have his books in his room PRIOR to bedtime.  Last night he kept coming out of his room to get more books, and the final time I told him he needed to get back in his room immediately or he was losing all of his books for the evening.  He ignored me, so I confiscated his books.  This resulted in a full on melt down with me being the evil person and him accusing me of breaking promises.  He said he made a promise to himself that he could read every night before bed, so by my taking his books I was breaking his promise.  I think his meltdown went on for nearly an hour.

Today, prior to lunch, he kept picking on David and Anastasia. So I sat him down to have a talk with him about stopping when someone asks him to stop teasing them.  The whole conversation he had this grin he gets on his face when he's being a smart butt, and he kept talking back so at the end of it I told him to go to his room and stay there until it was clean.  An hour later it wasn't clean, so I sat the other two down for lunch and told him he could eat his lunch when the room was clean.  Again, another hour of screaming about how he was going to die if he didn't eat right then, and how awful I am, and that it's MY fault he can't clean when I ask him to because of me asking him to (?).  Finally he decided to clean and was happy as a clam afterwards.

I really don't like this stage, at all.

Picture update

I promised pictures, so here are a few. I promise to get some more up soon.

Heres some of Charlie.  I love this little jacket!

And here is some of David.  He wanted to wear his sisters headband.  I love how big his eyes are, and how long and dark his lashes are.

Here is Anastasia.  It's not as easy to get pictures of the older two, they constantly ham it up.

And here is Anthony.  He lost his first tooth on Saturday!

Here's David and Anastasia walking down to see the puppies

And here is the newest addition to our family, coming home in 3 weeks!!  And his little litter mates.

Flood! Maternal Fetal Appt.

Yesterday I had the first of many appointments in the next week.  I had to check back in with Dr. Barsoom.  I think this was my 8th or 9th ultrasound so far this pregnancy.  He recently had his office renovated and moved and this was the first time we've been to the new one.  It was a lot larger, and really nice.  All the rooms have huge flat screen T.V.'s so you can watch the ultrasound being performed instead of trying to look at the tiny little screen. It was really neat.  Charlie is doing great.  Still head down, which was a huge relief.  One of my biggest fears is that I'll need a c-section.  He's not a very active baby at all and moved a little but he was asleep most of the time.  Right at the end of the ultrasound we saw him stretch and yawn, which was absolutely amazing.  They tried to get a good shot of him in 3D, but since he's still so low the amniotic fluid is a little low near his face and makes it hard to get a good shot.  We ended up with about 10 more pictures to hang on our fridge.  Our fridge is completely covered with u/s pictures, it's crazy.  He is definitely still a boy, and there is no denying that.  It was quite crystal clear on the ultrasound!  He looks a lot like David and Chris's brother Cameron so far.  At least on the ultrasound he did.  Definitely has the Mizzell nose.  After the tech was done one of the two student techs with her asked if she could play around with the machine on me, I told her it didn't bother me any and she continued looking at him for 15 more minutes. After she left Dr. Barsoom came in and did his own ultrasound.  By the time he was done it was a good 45 minutes of laying on my back and when I sat up I felt my sciatic nerve had gone inflamed.  Sucks.  The rest of the appointment went well.  Dr. Barsoom said he'd send a letter to the surgeon telling him to go ahead and do the surgery while pregnant if thats what is holding him back.  He seemed taken back by the thought that the surgeries would all happen at the same time - which is exactly how Dr. Schropp my OB reacted - so at this point I'm thinking when/if they do the surgery it will be more than one surgery.  Dr. Barsoom strongly wants me to have an EKG to check my heart and make sure it's functioning well.  Some forms of EDS can come with heart issues, so it's important to get it checked every so often to create a baseline.  So I'm scheduled for that on Tuesday.  I go back to Dr. Barsoom in 4/5 weeks and that will be my last appt with him!

 Last night we gave all the kids baths.  David and Anastasia were taking a bath in the master bathroom, and Anthony was taking a shower in the other bathroom.  Since we live in a disability house the main bathroom is handicap accessible, which means that the shower in there is flush with the floor.  The two younger ones were splashing and getting a fair bit of water on our bathroom so I called to Chris to help me get them out of the tub.  He was walking down the hall towards the master bathroom and noticed the carpet was absolutely soaked along the wall to the main bathroom.  He called to me to check it out and we opened up the main bathroom floor to discover Anthony stepping out of the shower into a completely flooded bathroom.  I immediately looked at the toilet thinking it must have been clogged, but it wasn't.  Anthony began crying and repeating, "I'm sorry, I'm sorry" over and over.  We asked him what happened and he said he clogged the drain with a towel.  Chris was just speechless and pretty angry and I was just dumbfounded.  We told Anthony to go dry up and get ready for bed while we began inspecting the damage.  There is a linen closet inside that bathroom that we keep all the blankets in, the whole bottom was soaked as were half a dozen blankets or so.  We don't keep much under the bathroom sink as it's a wheelchair accessible sink and therefore there is no bottom to the cabinet under there, but there were some extra rolls of toilet paper that were destroyed.  The water had climbed up the exterior wall and that's why the hallway was soaked.  Chris went and got the two youngest out of the tub while I began laying down towels to soak up the hallway and what I could get in the bathroom.  After we got all the kids ready for bed Chris asked me to go talk to Anthony because he was just too upset to do so at the moment. I went in and he was just distraught.  It was the first time I had ever seen him so upset for his own actions like that.  I asked him why he had clogged the drain and he told me he had wanted to go swimming.  I asked if he realized how much the water and messed up his bathroom and the hallway and he told me he understood and again told me he was sorry.  I actually felt bad for him because he was so upset but I told him that he wouldn't be allowed to stay up and read in bed that night.  He understood, I kissed him, tucked him in, and told him I loved him and turned the light off and left.  After I talked to Chris he calmed down and went to talk to Anthony himself.  They worked out that because we needed to spend so much of our night cleaning up this mess that when Anthony got home from school he would need to clean the playroom by himself and without complaining, Anthony agreed that this was appropriate.  This morning he was so happy to see his bathroom back in order and told us that when he got home he'd get the playroom cleaned super fast.  

Growing up I dealt with a lot of floods in my basement back in Maryland.  This was so minor compared to that.  I think this is why I wasn't as upset as Chris was about it but we both agreed that Anthony had to understand how badly he could have messed up our walls and carpet with flooding the bathroom on purpose.  I do have to say I'm proud that the both of us kept our heads about us, it's not always easy to do so when you have kids.