Posts from the ‘1 year’ Category

Nightmarish Reality

Saturday night I had what felt like a dream but based on content alone was a nightmare.

Rob dropped me and Emmett John off at a family Christmas Party, only Emmett John wasn’t nearly 2 years old like he is now. He was almost a newborn, maybe a few months old. Once Rob dropped us off he was gone, he never came back.

I was at this Christmas Party alone with Mr. Emmett John. Then I realized who else was there. The guest list went something like this:

  • Barb (Adopto-“Mom”)
  • Mary (Bio-“Mom”)
  • Aunt Carol (Rob’s Side)
  • Susie (My Side)
  • Auntie Paula (My Side)
  • Grammy (My Side)
  • the rest of the guests I knew but don’t remember

The other guests were various female family members that I knew but I don’t remember at the moment. They all had one thing in common: I’ve felt at one time or another or more likely through most of my relationship with them that they are/were disapproving of my parenting style or skills.

Every guest at this “party” was critical of me from the moment I walked in the door with my tiny baby infant Mr. Emmett John. They were telling me what I was doing flat out wrong, what I was doing just a little wrong, and “really you want to do that“. They kept trying to take Emmett John from me every time I went to take him to nurse. Every time someone took him it was next to impossible for me to get him back. They were making it very clear that the sole purpose of this “party” had been for them to trick me and take at least 1/3 of my children.

The entire dream/nightmare everyone, except my Auntie Paula, took every opportunity to tell me how much they hated me. How horrible of a mother I am. How I don’t really do what’s in the boys’ best interests; I do whatever is easiest for me. I’m lazy.

My Auntie Paula kept telling me that, “Maybe if you hadn’t cut them out of your lives, no matter how much you felt it was the right thing to do. Things might be different now.”

Everywhere I went in the house, someone was right there with me. Either harassing me or attempting to relieve me of Emmett John. It was just exhausting – more so than some of the gymnastics or running dreams I’ve had.

Belated update ~ Sickie

I took Mr. Emmett John to see Dr. H. After the Tylenol had kicked in, his fever had dropped from 103 to 99.5, which was comforting to see. Dr. H gave Emmett John the once over and felt that Emmett John most likely had strep throat. So I held Emmett John still and his arms down so he couldn’t use his lightning quick reflexes against us during the strep test. I about lost it (laughing) when I realized that Dr. H was sitting on his rolling circular stool and leaning *way over* to get the strep swab. I asked him if there was perchance a reason. He said, “One of the first things you learn in Residency – after a few swift kicks to the groin during strep swabs etc – is that you need to find ways to protect yourself.” (Lol)

Yes, I will admit, I have a bit, possibly more than a bit, of hero worship for Dr. H. He’s a wonderful man and a miracle worker. When Elliott Richard was 11m he listened to us that something was hinky and being the conservative doc he is he admitted Elliott Richard to the hospital. He’s been conservative and saved my boys nurmerous times over the past 3 years. So yes, I have some Hero worship. But its harmless, I swear. He’s just a good looking doc I worship. (Lol)

Anyway, back to Mr. Emmett John, his appointment and present day things. Then Dr. H tried to get Emmett John to smile. Emmett John just scowled at him per usual after something like that. He wasn’t having any part of the pleasantries stuff. He was done and he wanted to go home – end of story.

We never heard back about the strep, which means that both the Rapid Strep and 24 hour Strep were negative. So we are left to our own devices when it comes to getting him through it. Its been fun. Let me tell you its been…well, it’s been Hell. He screams – a lot. It’s like colicy Emmett John of almost 2 years ago hopped up on steroids!

I pray this is over soon or I might lose my mind before Emmett John ever enters Middle School – forget getting their diplomas. Oy!

* posted on the fly w/o use of proper editing tools 😉 *

~ Lizzeann

By the numbers

I’m starting this post at 8:00 am. These are the numbers so far for the day.

1 – # of children we know are sick with an unknown virus
2 – # of doses of Tylenol on board so far (Yeah, I gave some to the sicko too. Lol j/k)
1 – # of children suspected of coming dowing with unknown virus
2 – # of nights Elliott Richard has slept without a nightmare/night-terror
5 – # of stairs I fell down in the middle of the night
6 – # of degrees in Sickie’s fever (103 total – he runs low to start)
2.5 – # of hours till Sickie’s appointment with Dr. H (it’s now 12 noon)
100 – % I am that I’m going to lose my mind before all 3 of them gain a diploma

Now I need to go take a shower and get ready to go to the pediatrician’s office today. As we all know by now, Mr. Emmett John, a.k.a. Sickie, either “goes big or goes home”.

Too bad “going big” includes a swing by Dr. H’s office.

On a side note, if you don’t mind sending up a prayer for my Nearest & Dearest Nikky. About the time Emmett John and I are getting to Dr. H’s office, she will *hopefully* be finished with her c-section et al and doing the Meet & Greet with Baby Scarlett.

Please pray all goes well and smoothly. Thanks.

I’ll be sure to update when I know more.

*posted on the fly w/o use of proper editing tools ~ Lizzeann*

Potty…er…Latrine Training Anyone?

Mr. Emmett John has been showing signs that he might be ready to try potty training soon. (More about that in another post.) So last night Elliott Richard and I brought the potty chair out of the attic and this morning he and I cleaned it off. Then being Elliott Richard, he wanted to set up the potty immediately for Emmett John. He told Rob he would help him set it up and, “First, we dig a hole for the poop and pee.”

Yup, my 4 year old wants to dig his first latrine. (Lol)

Autism & Carefully Directed Violence?

Emmett John is a very angry little guy. Understandably so, however, that doesn’t change the fact that he can’t go through life that way. I mean no one wants to be angry forever. Plus he’s so angry with no way to express himself that he lashes out…at me. He doesn’t lash out at anyone else, just me.

It’s crazy. He:

  • hits
  • pinches
  • bites
  • punches
  • scratches
  • slaps

me. Plus he has this scream…it’s horrible. It’s high-pitched, long-winded and just grates…it kills me every time. Especially when I already have a migraine…forget about it.

The physical abuse is what really and truly gets to me though. I don’t know if it’s because of my history with Nick or because he doesn’t abuse anyone else that way. But I’m starting to feel just the least bit unloved.

Now he hits his brothers. But that’s a brotherly-completely- age-appropriate thing, his Help Me Grow Case Manager Tiffany said so. He doesn’t go after them with the vengeance he seems to come after me. He’ll come to me, arms up appearing to be an adorable 22 month old little boy. Then when I pick him up he attacks me! Literally. He begins by punching me in the cheeks, these little baby punches that quickly turn painful. Then he pinches. And it quickly swirls out of control from there. Dr. H had told me to

  1. Tell him “NO” in a stern voice with the “angry Mommy face”.
  2. Put him down.
  3. Walk away and “ignore him” for a bit.

whenever he bites or scratches or hits etc me. Yeah, I do that. It has absolutely no effect whatsoever on him. He doesn’t care. He walks off. Does his own thing until the “punishment” is over. And then is thrilled when I pay attention to him again – since I obviously can’t ignore him forever.

I don’t know what to do.

I am already in muscular pain to some extent everyday of my life from the Fibromyalgia. Then you add a 2 year old (for all intents and purposes) hurting and injuring me on top of that, at every available opportunity. I don’t know if I can survive that.

I’m already so far over my limit. I’m so close to my person edge. I don’t know if I can take much more. I know there are sensory issues at play here. I know he can’t talk and really can’t communicate for all intents and purposes and that much frustrate and anger him but I can’t continue to be his outlet for that anger and frustration. It hurts too badly.

Perhaps I should feel loved that he turns to me Or honored that I’m the one he chooses? But I don’t. I just hurt. I’m tired of my doctors looking at the injuries he inflicts and thinking I’m self-injuring – because I know that’s what they think. I tell them where the injuries came from – they don’t believe me. I’m not stupid. I can read their expressions and the fact that they are feverishly taking notes but never again mention the marks and injuries.

I don’t know what to do.

I don’t know how to stop him. I don’t know how to get him to stop any of these dangerous and negative behaviors. He fell down the stairs – most people would have some degree of fear or apprehension about going up and down the stairs after a fall like that. Not Mr. Emmett John. He just keeps screwing around on the stairs. We. Can’t. Get. Him. To. Stop. We are consistent. We are strict – as “strict” as possible with a 22 month old. We say “No”. We do everything we are supposed to do but it doesn’t work.

I don’t know what to do.

How many times must I mourn?!

I keep trying to get this blog exactly right. Just perfect – the way I want it. I’ve decided that it’s going to take me close to forever to get that accomplished and if I keep putting off my first official post until then…well, you may never hear from me again. (lol)

Emmett John had his ABR sedation hearing test yesterday. We’ve been waiting for this test for months. He had his basic OEA hearing test in January and the Audiologist couldn’t officially diagnose him but she said she felt comfortable saying that he had “moderate to severe hearing loss”. Meaning he was very close to being profoundly deaf. I was so sure he was deaf. I was ready for him to be deaf. I was ready to learn sign language.

Honestly, with the Hell that we live through every single day with Gavin and his Autism and Bi-Polar and whatnot. The Hell I endured at the hands of NTD and his mother before I met Rob. Then the continued Hell we suffered because of them after Rob and I were together – all throughout my divorce and custody battle. The various moments of Hell throughout my childhood. Surely, God wouldn’t do this…not again. Surely, he watched and he understood. Surely, he knows and understands that we can’t handle another Autistic child.

Oh forget the we*I* cannot handle another Autistic child…at least not right now. I just can’t. Not with Gavin manic the way he is. Not with Gavin hearing voices again. Starting puberty and having medication changes because we are on the “medication roller coaster” again. Not with Gavin having meltdowns of a caliber unlike anything I’ve ever seen from him before. It’s only a matter of time before he breaks his window or seriously injures himself.

Emmett John’s hearing is perfect. Everything we say…every sound…every everything he hears physically. But developmentally, he doesn’t hear most things. Apparently, this is common in Autistic children. I didn’t know this. He doesn’t make good eye contact – I thought he did. He throws these fits – I thought they were normal 21 month old fits…the Terrorist 2’s…now, not so much. So he can hear us but doesn’t talk. He babbles – like a 9-12 month old. I have no idea if he’ll ever actually talk. Does that mean he’s more likely Full-fledged Non-Verbal Autistic? Or could he still be some sort of High Functioning Asperger’s?

This will probably sound crazy and stupid to many of you. But how many times must I mourn the loss of my baby?!

How many?! He stopped responding to us. So obviously he couldn’t hear us. Right? So we schedule and take him for his OEA hearing test and he fails. The Audiologist says she feels he has moderate – severe hearing loss. I mourn the loss of my baby boy. I mourn the fact that I likely will never hear his voice the way it was intended. I mourn everything that he will never do. Never experience. I mourn every time he shoves a finger in his ear and gets frustrated because he appears to be unable to hear. I mourn because I don’t know when the last time he heard our voices was. Will he be able to remember them? How long can he hold on to those memories? I mourned many things when I believed Emmett John was deaf.

Yesterday all of that was Gone. Swept away in a moment. I had an Audiologist telling me that my baby could hear. Explaining that his “hearing was perfect” and he “doesn’t make good eye contact” and “hearing problems are common in Autistic children“. Now all of my work to recover and work on my mourning over his hearing loss had disappeared in a flash. The sedation nurse was so positive about the fact that Emmett John could hear – isn’t this great? Of course it’s great. It’s wonderful and I’ll do cartwheels – as soon as I mourn, again.

So here I am. Mourning my Baby Boy, again. Mourning for him. Mourning for us. This isn’t a life I would have chosen for him. This isn’t something I would have chosen to add to our lives – ever.

I’m mourning the loss of Emmett John in a host of new ways. I’ll recover in a few days. Until then, I’m just going to mourn and work on trying to make my peace with things.

What *IS* the language of Emmett John?!

I took Mr. Emmett John to his Audiologist appointment on the 20th, whatever day that was. I can’t remember anymore. You’d think I would remember that day. I feel like I should. I feel as if it should be etched into my brain forever:
Wednesday, January 20th, 2010 @ 3:00pm: Emmett John’s world officially closed off forever.
Emmett doesn’t like to have his ears messed with. Even to have them checked by Dr. H for a run of the mill ear infection I have to hold his hands down with one hand while I hold his head against my chest with the other hand. He hates it. So when she tried to put the little things in his ears to see if his eardrums even moved, forget it. The different and smaller little things to actually test whether or not he can hear sounds, not a snowballs chance. In stead she tried a rather crude method.
Emmett John sat on my lap with a little round tub of rubber beads to play with. The Audiologist Assistant (?) sat across from us to watch Emmett’s face for startle reflexes and various reactions. The Audiologist left the walk-in-freezer…er sound-proof room and went on the other side of the little window. Then she began calling out to Emmett John through the speakers. She started at a whisper and increased her volume until she finished up screaming. He didn’t flinch. He didn’t move, startle. Nothing.
It took literally everything I had in me – everything good and bad and indifferent – to not react and accidentally tip him off.
Then when he wasn’t responding at all. It took all those things not to tip him off and not to fall apart.
I was beyond devstated. My baby couldn’t hear her. She moved on to the beeps because A) she has to and B) sometimes it seems as if he can hear loud, high-pitched cell phone ringtones. She began at a whisper and slowly increased the volume with the lower tones. Nothing doing. Then she switched to the high pitched tones. Again with the whisper slowly increasing the volume. Nothing doing. At one point she turned these monkey noise making toys on that sat in boxes above the speakers. He reacted to those and we all went wild. Then she said she wasn’t comfortable marking that he reacted to the noise because he could have seen the lights out of the corners of his eyes.
My heart broke again.
In the end, she said that if Dr. H had not already been recommending the ABR she would insist upon it. His OAE had not shown any clear results expect that she felt comfortable saying that he is at least suffering from moderate hearing loss. She said that he cannot hear at 45 decibles, which is human voice. She then went on to explain that there is a very slim chance that he can hear at 65 decibles and above, which is a screaming human voice. However, she is absolutely comfortable saying that “he cannot hear at 45 decibles and suffers from at least moderate hearing loss”.
I’ve been working on teaching myself basic American Sign Language with a website so that I can try and communicate with him in some way. He has to have something. I can’t imagine what it must be like to not be able to hear anyone. Not be able to convey your needs to anyone. It’s no wonder he’s been walking about pinching and hitting and all out screaming for ages now. Rob and I spoke to Dr. H on Wednesday at Gavin’s 10 year check-up and we also feel certain that nearly all the appointments where I drug Emmett John in to the office saying “He’s fussy, won’t sleep, just screams and pulls at his ears.” he was pulling at his ears because he was likely losing his hearing and we didn’t know it. If only I had followed my mother’s instincts all those months ago! I wonder what may have turned out differently.
Anyhow I can’t do anything about it now. What I can do, what I am doing is learning ASL so that I can communicate with Emmett John, at least until he picks it up as well. I’m not very good and I don’t know very many signs. Emmett John seems tickled pink that he can understand though. He signed his first word the other night, Daddy, which was HUGE! I’m teaching Rob what I learn as I go along. I try and teach Gavin and Elliott Richard, too. Gavin wants to learn as much as I have to teach him. Elliott Richard flat out refuses to learn. He just keeps yelling at Emmett John in stead.
It seems that every time we start to find some semblance of normal around here…I don’t know why we try.
We can’t get in for his ABR test until March. Dr. H tried to convey to the lady that he would like Emmett John’s case expedited. She got snippy and told him that the 25 children ahead of Emmett John would like their cases expedited as well but it doesn’t work that way. Emmett John will just have to wait. Dr. H then asked that Emmett John be put on a cancelation list and she tried to make it sound all horrible – like I would decline because of short notice or something. Clearly she doesn’t know me – well, obviously but you get my point. So now I have to wait for her to get off her high horse and call me with an appointment because she wouldn’t make it with Dr. H’s office because “that’s not how I do things!” ARGH! Like things aren’t complicated enough? I need a chick on a power trip?!
This whole situation is just making me sick. My fibro meds aren’t nearly as effective any more. I’m having migraines all the time. It’s just crazy. And because I’m the ASL one in the house right now, Emmett John is my shaddow. Never mind Henry, my new dog, whom you know nothing about, thinks that being supportive translates to being under foot where ever I go. Elliott Richard wakes up at 3am lately. Heck, even Emmett John has been waking up at 3am for some God awful reason! I don’t know why he does it because unlike Elliott Richard, he’s clearly not bright-eyed and bushy-tailed and ready to go. He’s just a great big fuss pot looking to make my life a living Hell – totally uncool.
My Mom is actually worried that I’m going to snap under all of the stress I’m under right now. I’m not sure if I should feel flattered that she cares so much. Shocked because she’s managed to see through my facade so quickly when I’ve known other far longer and they’re still in the dark. Or offened because she seems to think me so fragile. (lol)
Oh well, that’s all we know on the Emmett John front. I didn’t intend for it to be so long. Sorry about that. Oh, and by the way, if I ever refer to him as MJ it’s just a carry over from signing. We’ve found that MJ is easier for everyone to sign (especially quickly for some of us) than EJ. So just make a mental note: MJ = Emmett John. =)