When life hands you lemons…

I’m back, mostly. Maybe not as frequently as I might like at this point, but I’m back anyway.

My surgery was a little more complicated than we originally thought. The good news: NO cancer. The bad news? My bladder was completely adhered to my uterus and was in serious trouble. They fixed that while they were in there, but DUDE… OUCH. Instead of being out of work for 2 weeks, I will be out 6 total. Thank God for Short term Disability benefits.

Hubby had to reschedule his surgery due to my complications and some newly developed high blood pressure… Anyone see a relationship there? He always said that I raised his blood pressure, but I never believed him until now! His surgery was rescheduled for the end of the June.

THEN.. Yes, THEN… Turns out the woman who owns the house we live in has not been paying the mortgage with our rent money.. That means the house is in foreclosure, was sold and we are now having to vacate the premises by June 17th. Yeah. Oh.. let’s not forget, find a house big enough for us, in a decent neighborhood, with rent we can afford, and make up a first months rent and deposit by then. AWESOME.

Hubby has now rescheduled his surgery until the end of July, so that we can move. Poor guy.

We have found a home and are in the process of packing.. Which sucks. BIG. Like REALLY big.

THEN.. oh, yes.. another THEN. Moosey was running around the driveway.. barefoot, of course (WHAT??? I hate socks, remember???), tripped and fell on a metal bracket from the shelves we are taking down in the garage. He gashed his foot open and we spent the better part of our afternoon and evening at the ER debating stitches vs. glue vs. who the hell knows what else, while steadily ticking him off by poking his foot. Good times.

Mad is all worked up because of the chaos and is starting to bolt out of the door, into the street, down the block, through the store.. wherever he can. He having a rough time. We are going to lose his home teacher we love so much.

Oh my gosh.. I need prayers you guys. And maybe some movers. Or a bottle of wine.

P.S : I love the new house! More details in another post.

The poop hits the fan

Wow. Things are really about to go wild around here.

Turns out my yearly girly exam didn’t go that well. I’ll be having my internal lady bits removed the day after tomorrow.  I’ll be in the hospital a day or two and then home recovering for a couple of weeks.

Hubby will be having surgery on his shoulder May 24th. Old football injury come back to haunt him. Which of course sounds WAY more self-important than it really is. He’ll be in a sling for 4 weeks.

5 children, 2 of them special needs, 3 cats, 1 dog (sorta), and a house with a garden that still needs planted.. vs. … 1 armed Dad, and half a Mom. Game on, folks. Game on.

Anywho, If anyone should be so inclined to keep me alive for the next week to week and a half, please email me at cgillajs_5@yahoo.com. I’ll owe you one. Not that you want me to post on your blog. God knows, I make no sense.

Now for the Mad-Hatter silliness. At OT, he was to “color” a picture. All Mad wanted to do was to play with the Potato Heads his OT had brought in for later. He was really REALLY insistent. Finally, she decided to put a couple on the table in front of where he sat with the crayons. She told him to “Draw the Potato Heads on the table.” She then turned around to put away the mess from the Tunnel Crawl he had just completed. You guys, I knew he was literal, but not like this! He actually threw the paper on the floor and started drawing a picture of the potato heads on the table itself. OT turned around, saw what he was doing and cracked up. I think he followed directions pretty well! Touche, Mad. Touche.

So, I am still getting over the flu, and really distracted with the surgery business.  If I post infrequently, or even really small absurd posts. You’ll know why. I really hope to hear from some of you, I could totally use your help.

Everyone in Line!

Mad-Hatter has been on a roll lately. Probably a paper towel roll, but a roll none the less.  He has been showing us his sensory seeking behavior on a much more frequent basis. More than flapping, rocking, and paper ripping, I’m talking about weird noises, lining up everything that isn’t nailed down, and getting into danger.

I have gone through approximately 5 rolls of paper towels and three rolls of toilet paper in two days. While my family is large, and does indeed use a lot of these items, this is pretty dang excessive. I.E:

I was cooking dinner friday night. Some kind of shrimp, peas and boxes of Pasta Roni. Gourmet, I know. I had the boxes on the counter, and Mad came into the room. He didn’t say anything, just walked in, watched me stir the pot, then left. Until the time came for me to grab the boxes and add the contents. All of the boxes were lined up in a neat little row across the counter. Gee, I wonder who did that.

Went into the living room to call the kids for dinner. I stepped on a REALLY freaking sharp pointy thing. I looked down and saw a row of dinosaurs from one side of the room to the other. YEAH. Ok. Mad’s been here, I see.

THIS IS WHERE THE TROUBLE STARTS.

The kids weren’t in the living room anyway (of course not, they actually go play when I want them close). I walked down the hall and saw that Mad’s bedroom door was closed. This is NOT GOOD. This is like DEFCON  at our house. I tried to burst into the room to stop him from whatever he is doing that he shouldn’t be. The door slammed into something and I about broke my neck when I hit the door head first. (BTW, all of the other four where laughing their butts off. At least I am good for something, huh?) I push my way into the room ( I knew it wasn’t him behind the door, just an FYI).

I saw that he had ripped the screen off and was throwing the entire contents of the room out of his window. The window with the built in screens that he ripped… The window with the baby locks that he had disengaged…. People.. WTF am I supposed to do now?

I am out of ideas. We have door locked from the inside and require a key to open, on both older kids bedrooms, the bathroom and the front door. What else do I need to do here?? He can figure out how to unlock the doors if the key is nearby, so they are kept in our pockets. If he gets into the bathroom, he will clog the toilet, ruin all of the paper and cover himself in bandaids. I’m screwed here guys. I have no idea how to keep him safe like this.

He has been stuck behind the bunkbed and the wall ( ala Trouble a few weeks ago), locked himself out of the house, tried to give himself a bath in the kitchen sink.. TWICE, locked ME out of the house, broken a decoration and the new media cabinet, ripped his mattress… OMG, my head hurts.

Before anyone accuses me of not watching him (which is what I get from my parents and in-laws), I AM watching him. I am freaking always there. It’s like he waits for the 5 minutes I have to go to the bathroom, get the mail, switch the clothes in the washer and dryer, or am dealing with another child.

Anyone feel like giving advice? I can’t just sit there and stare at him, and that isn’t going to help him learn to be independent, either. Why does no one prepare you for the “child” proofing needed for these kids? Please guys, what would you do? What has worked for you?

Speeches and Senators

So yesterday was a busy day. I was to get up in front of a room of senator’s and senator’s aids, and speak. PPPFTTT. No problem! HA, sure. Right. Perfect. There are other issues my family faces that I will get into more detail about in another post, but for now, you just need to know that I was to get up there, tell my whole sordid story and show the Senators how their funding is helping give people their lives back. That their funding and support is necessary and a wonderful gift. Why me? I have no freakin’ idea why they felt I would be qualified to do this, but they did, and so I did. You see, the catch was, they were allowing me to thank the state for their funding and support of Autism research and assistance as well.  BONUS!

It was a luncheon and it was in the State Capitol building. Yeah, no pressure there, huh? We arrived, I shook hands with some very important looking people (I had only heard of two of them… I’m so very in sync with our government aren’t I?), and proceeded to sit down and sweat. A LOT. Bit my fingernails a lot too.  Then we ate. (this is riveting stuff, I know). Meatloaf, corn and some weird potatoes with cornflakes on top.. What the heck kind of meal is that for a formal luncheon? Oh well. It wasn’t too bad, if you like heavy gassy food before getting up to speak in front of a lot of important people. With corn in your teeth. OK, I’m over it now.

After we ate, we were introduced by the Commissioner of the Committee that we shall discuss in another post.  My husband spoke first. He did really really well. Then.. me. I actually think I did rather well. I saw some with tears in the eyes, which was impressive and unexpected. I cried, of course, because that’s what I do 🙂 I took the time toward the end of my speech to thank them for their help and support in Autism Research and their support of all other disorders affecting childhood. I know, Autism isn’t just a disorder of childhood, I just didn’t know how to include ADHD and Mood disorder in Bubba’s case.

Following the speech, several members of the state shook our hands and thanked us for our time. One woman, who is also a director for our Health and Human services came up and hugged me. She asked me if I had the support I needed for our Special Needs Kids. I wasn’t entirely sure what she meant and commented that our family was here. She wanted to know if I had the support of other moms in the area who are going through similar things, and the medical support we need. I had to tell her that I wasn’t sure. I am not even sure what we should have. She smiled sadly and nodded. She understood how hard this road is, and without directions, how can you find a destination?? This amazing wonderful woman, is giving my the names of two very influential people who run state funded groups for Mothers of Special Needs kids. She is also giving them my names. AMAZING.

A little networking goes a long way.  This just reminds me of Mad. Everyone seems to worry if he is suffering with his “illness.” First of all, not an illness! Second, He doesn’t know any differently. He doesn’t know what it is he should be doing, so how can he be suffering? I don’t know what help I should have, and so I don’t go looking for it.

We have come so far, but the road is so long. There are no lights on the road, no directions to follow, and no specific destination in mind. I guess I’ll just blast the music and enjoy the ride!

Progress.. Slowly but surely

So Mad-Hatter has still not  seen a speech therapist. Cynicism -1 Hope -0.  I don’t know what happened to all of the urgency, but POOF. Gone.

The OT was going to bring Mad a weighted blanket, in the hopes that this would keep him from head-banging at night… on the wall.. to the point where the neighbors are woken from their sleep. Yeah people, it’s that bad. She never did bring the blanket, but felt that he should try the brush. Any of you used this? Mad L.O.V.E.S it. He actually “asks” for it. Score 1 for the OT. But seriously, where’s the blanket?

We had our final dr’s appointment. She stated that she had read only the results of his ADOS evaluation on our last visit and feels that she made a rash decision. She has since read through the entire report, and finds it absolutely “mind-boggling” that he received normal score on several portions of the test. She has seen abnormal responses, in person, on several occasions now that contradict the findings on the ADOS. She feels that the whole test is invalid. Based on that, and on the observations she has made. She does indeed feel that he is somewhere on the spectrum. *Deep Breath*

She isn’t sure if he is H.F.A or Asperger’s as he displays symptoms of both. He has Echolalia and a major speech delay, which leans toward HFA, but the social problems lean toward Asperger’s. I don’t really care what they call it, as long as it opens the doors he needs for help. I am now filling out two more questionnaires to help place him. I just love love love questionnaires… Can you feel the sarcasm?

This should upset me, shouldn’t it? I mean, what kind of a Mom is relieved to hear this? Apparently, me. There is a name for his troubles, something tangible (sort of).  It’s also not much of a surprise. I have felt that he was on the Spectrum since he was a year and a half. The validation this provides is such a peace of mind that it outways the sadness at this point. Besides, who says this needs to be such a bad thing? I love him, he’s an awesome kid. He thinks differently, so what? He needs treatments, therapies, etc. but he’s still my baby.

More dr appointments at the end of March. More info to follow.

So tell me, What therapies have you tried? What should I be looking for?

Update and Cynicism

Well, that was an ugly cry, huh? Sorry about that. Much has happened since I posted just a couple of days ago. You see, our dear Dr. B is still wavering on this diagnosis “thing.” It sure LOOKS like Autism she says, but socially, not so much ( in her opinion). I personally just think we have taught him some social skills and that 4 siblings forces him to learn as well. It is wonderful that he CAN learn (I like caps lol) and all, but I just don’t know that this rules him out of the spectrum. Aaaannyyway…

Dr. B called Mad’s teacher in the Spec. Ed division of the school system and lit quite a fire. She told the teacher that “This child is in DESPERATE need of speech and occupational therapy, as well as organized formal teaching, preferably in a group setting.” WOW, go Dr. B.

Mrs. W (Our teacher from the school system) came out for our usual appointment on thursday. She suddenly had information regarding a Developmental Play Group held once a week for Special needs kids, a weighted lap blanket (to help with his head banging and rocking? Anyone?? How does this help?), and wrist bracelet for me and hubby that has Pecs and prompts for social stories on it and more. In addition, Speech therapy will now be once a week at least, OT every two weeks, and of course Mrs. W every week as well. Even more than that, we are to get him in private therapy for Speech and OT (thanks insurance, love you kbai).

While this all sounds good in theory, part of me wants to hold back from the excitement. I am concerned that it may fall through, so something will happen to change things. Maybe that is silly of me, but the cynicism has been born and there is no reversing it at this point.

Bubba and his new meds are going.. well.. they’re going. Holy crash, Batman! When that stuff wears off, it does it with a bang. It is almost worse than before he was on it. I think it is helping him at school, though, and that is what really matters. We will see how it affects him during the day as the weekend begins. Did that make sense? Heck if I know.

The baby is talky mctalkerson lately. He cracks me up. I want to eat him 🙂

Gertrude Ann is doing great! She loves school and she loves her friends.. Even if I don’t, but that’s a different post.

Well, I think that’s it for now. I’ll keep you updated… I should probably get back to “work.” SSSHHHH, don’t tell.

Suckerpunched

Warning: I am not proofreading and editing this. It’s too hard. If you can stick with me through it all, thank you.

Wow, you guys. Really. What a week and it’s only tuesday. If you can bear with me through this rant, dear mercy, can I really use some support.Also, if you read this in one really long breath or two and maybe imagine some sniffles, you’ll get a more realistic effect.

 

Ok, so yesterday morning, both Bubba and Mad-Hatter had doctor’s appointments. Dr. B and Dr. D. Dr. B (I may have mentioned this before) is the Neuropsych currently seeing Mad. She is doing our final formal evaluation for the spectrum diagnosis. Dr. D is Bubba’s psychiatrist. Now that you are caught up 🙂

The appointments are on opposite sides of town. I mean OPPOSITE. So, hubby and I decided to divide and conquer. Unfortunately, this meant that both of us would miss out on something. This was THE appointment for Bubba. They would give us his diagnosis and treatment plan. This was also the second to last appointment at Dr. B’s and she could very likely have given us her impressions about Mad and the Spectrum. Bubba requested that I take him, so I did and Hubby took Mad.

Bubba’s appointment went as expected. He is ADHD, possible Mood Disorder and some anxiety. Nothing unexpected. Except the mood disorder, but even that… not really surprising. He is to remain on the Risperidone, begin Adderal, keep the Clonidine in case of extreme emergancies. The main surprise came to the fact the Adderall can increase his aggression/anger????? WTF??? Really?? That is NOT what I need. And please don’t get me wrong here.. I don’t mind hate can tolerate his Hyperactivity and attention span, but the fact that he is so uncomfortable in his own skin and cannot rest is unacceptable to me. So medication it is. We begin the adderall tomorrow morning. We shall see how that goes.

Dr. B and Mad played awhile again. Mad did point out some things that she showed him in the office last time. He still fixated on certain items. For example, once the blocks were used to show/match colors, she could not get him to count them. He would just list their colors. He still cannot distinguish Wh questions and what they mean. He did show some pretend play. He stimmed THE ENTIRE TIME we were there. She said that is unusual to see. She finally stated that since his shared attention is good (not great but decent) that she doesn’t feel that he is on the Spectrum at this time. WHA??? Guys, I don’t even know what to say to this. I will come back to my feelings on this a little later. For now, back to the appointment. She said that it is very possible that later on in life this proves to be Asperger’s but for now, she can’t diagnose him as that. She is going to “think some more on this” and meet with us again on monday to discuss. She very much feels that he needs to be in Head Start or whatever it’s called, and he needs private Speech and OT in addition to what the school is providing. She commented that this seems to be happening more lately. Children who for all intents and purposes APPEAR Autistic but are actually not. What the heck am I supposed to make of that?? Stereotypic movement disorder, Adjustment disorder, Pica, Speech issues, Speech processing issues… and back into limbo we go.

I feel like I have been slammed in the gut. What we have believed for so long (2 years) was a given, is not tue. We have a few vague diagnoses’ that really mean nothing to anyone. She is concerned that he is not yet potty trained… POTTY TRAINED??? Are you kidding me? He doesn’t have the words to ask for juice but he should pee in the potty?? (side rant over) I feel like I lost my community, my identity, and hope. Autism has treatments, help, and ANSWER and a name. We are no one, we have ultimately nothing other than a confused little boy, and exhuasted parents. The community of Autism moms have been my refuge.. Your blogs, you lives, your friendship and gotten me through, made me laugh, and feel like it would be ok. He is ok being who he is.

Now… I don’t know what makes my little man who he is… And I don’t know how to help him be him, without that.. Guys, who the hell am I?????

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