Would you like to play a game?

So, it seems that we have a new favorite game around my house! Are you excited? It’s really fun and apparently induces both manic laughter, and maybe a post-game nap…

Here are the rules of play:

1) Chew hands and feet off of all of the following found in a one room radius: baby dolls, barbie dolls, lego men, plastic farm animals, the tires off of toy cars (I guess this isn’t hands or feet, but work with me), doll house people, and most definitely plastic dinosaurs.

2) Pick up chewed on/mangled toy and state “dis broken. n da trash!” Then throw it away.

3) Laugh manically. Oh and LOUDLY. Can’t forget the loud.

4) Climb behind someone on the couch and just when they lean back (thinking you need some pressure), attempt to rip their hair out and eat it. Listen to screams of pain.

5) Laugh manically.

6) Climb down and pull off Daddy’s shoes. Sniff feet.

7) Gag. Then vomit from the gagging.

8 ) Laugh maniacally.

9) Play in puddle of vomit (Lord help me)

10) Lick everything within 25 feet of the puddle. (Not the puddle, someone will clean that up- Other players negotiate and determine who shall have the privilege. Rock paper scissors, maybe?)

11) While other players are negotiating puddle clean up duty, pour out all cups on counter, and empty a Sam’s Club size container of Kool-Aid powder on the floor. (Note: Powder must be red or no credit is given)

12) Play in Kool-Aid powder. Make sure you get enough on your hair to dye it.

13) Scream and cry when put in the tub.

14) Get dressed after clean up (you will remain red, FYI) and cry about having no toys to play with. “evryting broke.”

15) Scream horribly for an hour about no toys. Calm down and request “red shuce” (red juice= red kool-aid).

16) Scream when the clean-up players laugh maniacally. Oh yeah.. and LOUDLY.

Bits and Pieces

Oh, you guys.. ok..you..guy.. I seem to have one person read this consistently.. This is alternately frightening (since these are my thoughts, and not really about popularity) and AMAZING (cuz someone likes me!!).

After I last posted, we had another round of evaluation paperwork and another appointment. The evaluations showed autism ( I know! I was surprised too! *eye roll*), and the visit was another rollar coaster ride from hell.

You see, Dr. B decided that if Mad was pointing at the pictures on her walls than he probably WASN’T on the spectrum.. WHUCK?? Didn’t we do this the week before last, and then you changed your mind last week.. and now back to this? UGH. I think my brain imploded. She most certainly means well, but good gravy marie, this is ridiculous.

We had an appointment scheduled this month after an 8 month waiting list. It was for a really well known Dev. Ped. at a major university in our area. It is an hour away from home, so not too far, but not next door either. It would be a trek with a very stimmy, sensory seeking little boy… who unbuckles every five EFFING feet.. AHEM. sorry.. Got a little carried away. Anywho.. we asked Dr. B if we needed to keep the appointment. She said no. He was obviously on the spectrum, so it wasn’t really necessary. Okey dokey then. Hubby said he’d call the big university dev.ped. and cancel.

I went to last weeks appointment with Dr. B and after her announcement that he WAS NOT on the spectrum (oh, my blood pressure is rising again), I asked AGAIN (AAAHHH) if we should be going to the big university dev. ped. She said YES. Holy Mother, you have got to be joking me!

Fortunately, hubby is a notorious procrastinator and never called to cancel. For once, this came in handy! (Also, I like caps and exclamation marks – in case you hadn’t noticed). Out to — the big city– we went. Boy was that fun.

The appointment was LONG. More evaluations, more questionnaires, more simple games for Mad to “play.” The usual. Big City Dev. Ped asked all sorts of questions I have answered for 2 1/2, years, but with one major difference. He LISTENED. (<– see I used CAPS again). At one point, he asked about Mad’s sensory seeking behaviors. I was mid-answer when I looked over at Mad. There he was, on knees and elbows, tongue to the carpet, propelling himself along in one GINORMOUS lick. OMG.. SO NASTY. Big City doc saw this and says.. “HMMM.. I guess that’s a YES on sensory seeking behavior!” It’s also an understatement.

Big City Doc was surprised that Mad was not yet formally diagnosed, but could see the hold-up. Mad shows some joint attention, intermittent eye contact, and some social interaction. The difference between Big City Doc (BCD from here on out) and everyone else was that he felt the quality of Mad’s social interaction was very imature and superficial. Basically, it was a skill we have taught him and praised him well for, thereby making it hardly valid as a real social skill (Evaluation wise, anyway).

The long and short is this. Mad is now diagnosed as PDDNOS. BCD felt that he may later test as HFA, but for now, PDDNOS fits. The main point was that no one, until now, was willing to take the risk of “labeling” what may turn out later to be a mostly “typical” child after therapies and school. Sounds reasonable. Except, that without the label? He won’t get therapies and school.

Is it always like this you guys guy? Will it always be such a fight? Such a battle for my child’s life? I am about all done in.

The student becomes the master

I know I write mostly about Mad-hatter and autism, but I have other children. Children who are not affected by developmental disorders and delays. Children who go to school, learn things, do homework and then ask for my help on said homework… DUDE… Homework. I really thought I was done with that stuff. (sigh)

Gertrude is learning all sorts of ridiculous wonderful stuff that she will never use again need to be a capable adult. Unfortunately, we are now at the point where we must read a chapter in a text book and have her review our work before we can offer any assistance. I mean, seriously, what the heck is my third grader doing Algebra for? THIRD GRADE! ACK.

She is now officially smarter than I am. Maybe not in practice, in street knowledge or common sense (DEFINATELY not in cleaning… If you open her door too far the rats might get out), but book smarts? She is kicking my hiney. I was in “Eagle” classes throughout my school career. I thought I knew everything important.. Really, I did (think that, not know everything). She shows me everyday how wrong I was.

For example, third grade in our city raises baby chicks from fertilization to early chickhood (or whatever it’s called, I’ll be sure to ask smarta$$ later). She has been talking about these baby chicks non-stop for weeks. Who was a yolker, who was a quitter (BTW, not very nice, egg cycle naming people!), who was pipping, etc.

Anywho, I decided it would be a good idea to make some egg salad the other night… Do you see where this is going? Yeah.. She was..displeased. Crying ensues. Tears, horror, drama…blah blah blah. I get her calmed down and explain, in her terms, that these eggs are yolkers. They never met the Rooster and aren’t baby chicks yet. She calmed down, and everything was LA DI DA wonderful.

She is watching me peel the boiled eggs, and probably hearing me say some bad words ( I hate peeling eggs, really I do). She comments on the “egg membrane” giving me some trouble.. Yeah, AMEN sister! Stupid egg membranes. I finally get this one egg down to just a tiny bit of shell. I rip that piece off, and a whole chunk of the egg white comes off with it… Of course it does. Why wouldn’t it. Gertrude looks at me and says

“You have some Albumen on you finger.”

AAAARRRRGGG.. What are you fifty? Go watch some iCarly or something would ya? I think I will seal her up in tupperware tonight to keep her young. She really needs to quit this growing up crap.

A new tactic?

Mad-Hatter eats paper.. There’s a sentence I never thought I would write. He eats it ALOT. All kinds. He even stims and squeals in excitement when we bring out a new roll of paper towels. We have never been able to break this habit or do anything to get him to seek this input elsewhere. His OT feels that it is a sensory seeking behavior. We have most doors on our main floor locked from the outside and carry around a set of keys to open doors. It seems to be the only way to keep the older children’s rooms safe and off limits to the little book eater.

We have been trying for a week or two to leave the bathroom door unlocked so that we can teach Moose to use the potty. This is not going well at all. He has eaten and ripped apart at least one roll of toilet paper per day since we started our “open doors” campaign. Yesterday we decided the mission must be aborted. He just isn’t ready. Anyone with ideas or help would be appreciated here.

Mad was chewing on some TP saturday and I was at my wits end. I finally just asked him WHY he eats paper. He answered in his squeaky, high pitched voice “Cu I bi!” Which translates to “cause I bite!” Well, DUH. I asked why he bites. He looked at me for a minute (ok, ok. He looked at my forehead, but heck… it was at ME), “cu i fea va va gu!” (Cause it feels very very good!). Ah.. um.. well… ok, then.

People, he actually answered me! A sentence, about how he feels! That’s huge. Not particularly helpful, but huge.

We have tried so very many things to help him get his sensory input. Brushing, deep tissue pressure.. e-v-e-r-y-thing. Nothing is helping. If you tell him, not to eat paper, that paper isn’t for eating, he answers “oh!”  and spits it out into your hand. But then he does it again a minute or two later.

Sometimes I think he is screwing with me. Seriously, anyone been down this road?

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.

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