Archive for July, 2013


I went to bed at 1:30 this morning. Don’t know why, but I suspect it had to do with yesterday being my late night, my Adderall was taken later and it might have still been in my system. At any rate, Monkey Boy had his friend from down the row sleep over. That went VERY well. I was so proud of him.

And Aspie Teen as well. Maybe your house isn’t like my house, but my house is almost always in a state of somewhere between I just picked this place up and who the hell blew up what in this room? It’s a constant struggle for me, but I’ve learned to just let it be. What’s more important, that your kids saw you constantly live in a state of agitation because you were constantly cleaning, or them remembering you taking the time to NOT clean and sit down and watch TV with them? (I would’ve liked to say something more positive there, but I don’t feel like lying tonight I’m too tired).

Anyway I say that to say this, I told Monkey Boy that if he wanted to have his friend stay over, he had to clean up the downstairs and him and his brother had to clean up the Cave of Aspieness  which is their room.

I came home from work around 7:00 p.m. yesterday and my wife told me they got up first thing in the morning and started straightening up the house. The living room was neat, and vacuumed, and they spent a good amount of time in their room which looked SO MUCH better. I can’t even begin to tell you how most days I’ll just close the door after telling them to get the plates and cups down to the sink. I just don’t have the strength.

Anyway, because Tantrum Tot went to bed at a decent time, Wifey, Aspie Teen and I got to watch the movie Identity Thief, which was SO funny (except for some overtly sexual content/innuendos that they SO did NOT need to put in), and we all had a good time. After the movie wifey and I retired to our room with the Tot, Aspie Teen went upstairs and Monkey Boy and his friend got control of the large TV in the living room to watch a movie.

I told Monkey Boy that he was getting a late start watching the movie (10:00 p.m. to be exact), but hey it’s summer vacation right? But made him promise to shut it off right after the movie was done. Well we went into our room and I could NOT fall asleep for anything. Wifey was snoring away and this is a role reversal for us because I can literally fall asleep ANYWHERE and am usually out 2 minutes after my head hits the pillow. (Which is why I make sure my wife is set up with her drink, all her meds and pillows etc. before I get in bed).

Anyway, she’s snoring by 11:00 and I’m still reading my Kindle Fire. I hear the boys clowning around but after the movie they drop off to sleep too…finally around 1:30 a.m. I pass out. To be awakened by Tantrum Tot’s crying for a bottle at 4 a.m. I get up to get him a bottle, come back with it to Tantrum Tot on all fours in our bed, giggling like a maniac and from that kneeling position, jumped off the bed and ran out to the living room! WTH???

Needless to say, he refused to go back to sleep. I’ve been up since 4 a.m. Wifey got up as well. I missed the van in to work, and ended up having to take the Tot to day care, then coming home, switching vehicles and head into work driving under the divine influence of my Spanish coffee.

Made it through the day, came back and wifey had been at the doctor’s ALL day for an appointment. They finally started her on baby monitoring only she had to go for the first session today AFTER the doctor’s appointment and they made her go to the Triage center in the Emergency Room for the first visit??? She didn’t leave till 6 p.m.

She gets out, gets home, picks me up and we race over to the Day Care to pick up the Tot. I’m expecting him to be passed out on a mat or at least halfway to Pillow Street and Quilt Avenue.  But noooooo the little Energizer Bunny on crack is running around like he’s had a full nights rest!

We get him home, give him a bath and he’s still up and playing and giggling…now he’s starting to wind down, we put him on the pc playing Peggle but he starts losing it…hitting me, screaming. So I had to spank his little/meaty hand, because he mainly only gets spanked when he starts hitting during a tantrum, (not a meltdown). Well that sent him off the deep end…so I picked him up…sang to him a bit…and left him on my side of the bed with his pillow, blankey and bottle decompressing.

He’s asleep now, and I’m going to go move him, and then pass out. (hopefully). Wish me luck!

 

I’m sorry…I know this isn’t Facebook (I don’t have a FB page)…but Monkey Boy took a bowl of popcorn I made for him upstairs where the Tot was waiting for him…then all of a sudden Tot screams down the stairs…”Daddy! I want popcorn!!!

The wife and I whipped our heads up in disbelief…and Tot came downstairs and said it three more times!!

Oh glorious day!

Going To Be A Long Day

There is nothing quite like being walked in on in the bathroom at 5:15 a.m. by a wide awake 2 year old clutching a blankey, sippie cup and pillow pet.

After getting to bed at 12:30 a.m.  and forcing myself to get out of bed a mere 5 minutes before he walked in, I really wasn’t in the mood to play daddy.

But I put him in bed next to hi mom, covered him with a blankey and gave him a fresh sippie. This is usually the part that puts him back to sleep…however today he pointed (quite imperiously I might add), to the spot next to him and said “Sit”!

Knowing that laying down would put the kiss of death on my efforts to get ready for work, I managed to slip away and continue to get dressed. I thought he had gone back to bed and I had managed to avert disaster,when he came out the room again, (after waking up his mother by smacking her a few times saying Daddy! I want Daddy!)

He then made me walk him upstairs while he stood with his little chunky feet standing on top of my boots while I walked upstairs. We then walked downstairs with his demanding me to put on Netflix….so back in my bed he goes, Netflix comes on, I sneak out and go make my beloved Bustelo in my beloved cappucino maker.

My wife is up at this point, trying to make herself stay awake…I texted her I had to go and got in the Jeep. I feel horrible for my wife, but at least now he’s in day care full time and she can drop him off and maybe go back to bed!

OK so we’re sitting in the living room watching Big Bang Theory…my wife has Tantrum Tot laying with his head on her lap.

She starts choking, (on what I don’t know LOL) , but Tantrum Tot who was only half conscious at the time looked up and said” You OK Mom?”!!!!!

Cue sun breaking through the clouds, cue angelic symphony singing hallelujah, cue big old cheesy smiles and hearts brimming over from wifey and me!!!

I just HAD to say this…you all know that my wife and I just couldn’t get on board with the Dr.’s diagnosis that Tantrum Tot is not Autistic. I gotta tell you that I was pretty guilt ridden about not being happy about it. What kind of parent isn’t happy when they find out their kids not autistic?

A concerned one that’s who! I have seen the problems my oldest has…how no one, not even us, thought of Apserger’s Syndrome (DSM V be damned, it is a real thing and it does exist)! My oldest son has very real limitations that still need to be addressed. Early intervention could’ve done WONDERS for him. 

But when receiving that diagnosis, my heart fell that day. I’ve been tearing myself up about it…but after reading all your comments, and all the comments on my wife’s blogs, and FB page…I feel vindicated! THEY MISSED IT!

Aspie Teen has an appointment with a doctor very close to us, and who respects the doctor who originally diagnosed my wife. If they correctly diagnose Aspie Teen, I’m going to ask them if they can examine Tantrum Tot as well. Sometimes, a second (maybe even third) opinion is necessary. 

But thank you all for your support and your kind and encouraging words. My wife and I feel much better and much more prepared to continue fighting for our kids thanks to all of you!

Thank you all so very much. It seems so insignificant a phrase to say, after all I’ve battled and struggled with since Friday, and how your words were a healing balm…however, limited as it is the English language only allows me to say…Thank you all.

In all the madness dealing with Tantrum Tot’s diagnosis and the trip and the in law, I didn’t have a chance to post this. But I need to make sure I don’t rob the credit that Aspie Teen is due.

We have been watching Master Chef with Aspie Teen (14) every week. Aspie Teen has been developing his skills in the kitchen and this show is encouraging that. I have got to say that we are hoping this is a special interest that he continues to go after. To that end we are trying to encourage him to pursue it and he’s been learning how to cook.

I don’t usually like doing a lot for my birthday. Besides always being short on cash for the special events in our lives, it’s just too much drama trying to get a sitter for the Tot. The only one we can trust is usually the monster in law…and most of the time she makes it SO not worth it. We might go out, but more often than not just end up either making a dinner or cutting a cake on birthdays and special occasions. But this year Aspie Teen got an idea into his head that he wanted to make me a Master Chef Dinner.

So while I was at work, wifey took him shopping for the necessary ingredients and the pan that was needed to do what he wanted. He searched the Master Chef website, and watched YouTube videos on how to do what it was he wanted. He devoted his time and energy to making me something special. I am so proud of him. He did such a great job. I LOVE that he expended the energy he did to show me he loved me as only he could do.

After all the arguing, after all his pestering me every week for a new video game and getting yelled at for it, after all the oh my GOD how did this kitchen get this trashed AGAIN…he took the time to research, to watch, to talk to his mother…and produce THIS

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Now I’m a guy…which means I’m a carnivore. I LOVE meat…Steak especially. My wife took Aspie Teen to buy New York Strip steaks…and he LEFT THE FAT on them…(WHICH I LOVE)…and he made mashed potatoes and green beans with butter, garlic and lemon juice. The steak was one of the BEST I’ve had in a LONG time. I’m not just saying this because he’s my son…this steak was SUPERB…he made it medium rare just the way I like them…it was tender, it was juicy and it was EXCELLENT. Nothing says I love you Dad like steak…unless it’s your son taking the time to investigate, research and purposely execute cooking said steak!  Well done Aspie Teen…Bravo…

My wife and I were numb on the way home. Could it really be? Could we have made more of this than there was? After so long, after seeing him do things and responding to things etc. that we have seen and comparing them to what we’ve learned over the last 2 years about Autism, we were now wrong?

I wanted to be relieved. I wanted to wipe my brow and say whew that was a close one. However, I quite honestly couldn’t believe it. My wife feels like, they missed diagnosing her for so long, could we trust this diagnosis? To be quite honest, our faith in the medical community has been torn to shreds throughout this whole ordeal. We’ve been ridiculed, mocked, treated shamefully by “professionals”…True like I said in my previous post, these people were VERY nice and handled themselves so well…but can this be?

I still haven’t processed it. It still hasn’t hit me. Quite honestly I don’t know how to feel. I am still numb…I am still in shock and  a state of disbelief. Is that awful? I don’t know.

The day is done. It was a doozy. I’m going to start at the beginning to help me organize things. I’m still in a state of shock I think. Please bear with me, this my ramble a bit…

The Background

Since I’ve gotten a lot of new followers recently (thank you very much for that BTW), I’ll give a brief back story here…

I am married to the most wonderful woman in the world. Two years ago, we discovered that she had Asperger’s Syndrome (AS), which is a high functioning form of Autism. This diagnosis changed our lives and the way we saw things. It explained SO much of things that were going on with her that we had no explanation for. We have 3 boys, ages 14, 9, and 2 and she is due to give birth in September to our fourth and final boy.

Since her diagnosis, we have come to suspect that our boys also are somewhere on the Autism Spectrum, also high functioning. We’ve been having a hell of a time to find people where we live who will diagnose our children. The psychologist who diagnosed my wife has seen my kids when she’s had to bring them to her appointments and he’s confirmed that while he does not diagnose children, from what he sees, they are most likely on the spectrum as well.

Back in November, we took the youngest, lovingly referred to as Tantrum Tot and/or Tommaggedon, to a speech therapist at the referral of his primary physician. He was diagnosed with Severe Repetative Expressive Speech Delay. At the time he was barely 2 years old and they rated him at 11 months along in his development. This strengthened our belief that he was on the spectrum, and the person who diagnosed him, said she suspected Autism as well. His pediatrician referred us to a place in Charleston, SC, which is three hours away from us, for Autism screening. His words were “to confirm what he strongly suspects”, which was that our youngest son had some form of Autism.

The Trip

Today, we finally after much waiting (9 months of waiting) had the appointment.  I woke up at 4:30 in the morning today, after only having 16 hours of combined sleep for the week, got dressed, woke up my very pregnant wife, made my cappuccino and her coffee to go, went to pick up her mother and her boyfriend to stay with my other 2 boys, got the Tot dressed and in the van (he woke up and STAYED up) and we were on our way. Our appointment was at 8:45 a.m.

First, I got on I-95 South and missed the sign that said go THIS way to STAY on I-95 South. (I drive on i-95 NORTH everyday). I was on I-20 for about 15-20 minutes before my wife realized it and now we had to turn around and head back. Luckily there wasn’t much traffic at that time of the morning and I was able to MOVE IT MOVE IT.

(Oh yeah this was the first time we’ve taken the new van on an extended trip, which we were worried about since we’ve had problems with that model before. Click here to see the full post on that).

Along the way the wife gets hungry, (being 8 months pregnant does that to a person I guess), so we pull off the highway, and the wife sees a Subways sign…she now wants Subway’s…no argument allowed. We of course can’t find it. We’re losing time…the van starts doing something funny which made my blood run cold, my nerves are shot, so I pull a U turn at a busy intersection and when I do, I’m staring the stupid Subway’s in the face. We pull over, she runs in cause Tot fell asleep again right before we got there and I opted to stay in the van.

Now we’re behind schedule. Again, I’m moving it moving it. According to Tom Tom we’re still going to make it. Tot woke up again and is yelling in the back seat cause the sun is in his eyes, and we don’t have any Tot sized sunglasses with us. I valiantly give him mine, (my LAST pair which are polarized and I LOVE them, because I’m part color blind and when I put on dark shades, the world “washes out”, but these actually brighten things for me). He bends the crap out of them, but won’t wear them. We manage to find a long patch of shade and stay in it. He calms down. We’re still making it…we pull into the general area right on time.

The Visit

We find the building, and pull into the parking garage which apparently is attached to the medical center. However, it was a smack dab in the middle of this HUGE a$$ medical center and no one we asked knew where this particular office was. We had been trying to call them for the past 20 minutes prior to our arrival, to let them know how close we were. Because I swear to GOD if we got there a little late after 3 hours on the road and they tell us we’re not going to be seen there is going to be some CARNAGE going on! However, the number listed on the letter they sent us not only not picking up, it’s not connecting us at all!!!

So by the time we find the correct building, get upstairs and hit the receptionist area we are about 15-20 minutes late. Keep in mind this appointment was for a screening that would be FIVE hours long. I’m anxious and doing my Jedi/Samurai breathing techniques because I KNOW it’s coming…and sure enough the receptionist starts asking us questions followed by “Oh no, I don’t know if they’re going to see you now, you’re late”…I took my final deep breath, walked over and started to speak, but my wife was already giving her the run down!  “Look, we’ve been on the road for THREE hours, we tried calling, and your phones aren’t picking up, and it took us NINE MONTHS to get this appointment. We are NOT leaving here without being seen!” And through it all, she was very nice and calm about it too! GO HONEY!!! SO PROUD OF YOU!!!

Well we wind up being seen…Tot is behaving. We are in the first screening room, where they have a bunch of toys for the kids to play with. We’re being interviewed by three people, one a PhD and one doing her internship, and the other developmental pediatrician as well. Tot is behaving like a prince. He’s smiling, laughing, hugging….HUGGING! He ran into a few rough patches when he didn’t get his way, threw a little mini tantrum, not a meltdown, all while we’re being asked some very thorough questions by the person who is engaging Tot the whole time.

Now I must say this. I’ve been in doctors offices where the people treat you and your kids like they can’t wait till you leave so they can process your insurance forms. The exam, the visit, it’s only a formality on the way to their getting paid.  But these people were very kind, very compassionate and very very good communicators. They asked us questions, listened, asked for clarification, and didn’t utter a word of contradiction or try to shoot anything we said down.

They take him into another room with toys, ask us to please not interfere if we can help it. And begin to play with him and observe him. His interactions, what he does when he can’t get his way, how he plays, how he’s communicating with them.  After a while they let us take a 30 minute break for lunch with Tot in the cafe downstairs. (That experience could be a whole other blog post).

We come back up and they sit us down and lay it on us. Tantrum Tot does NOT display Autism. His social interactions are too involved to even consider it. Yes he has speech delay, but even that is being progressed rapidly since his introduction to day care. (Next week he starts going full time BTW). He looks them in the eye. He points to specific objects and clearly indicated he wanted more. He brought things to us to see, he brought them to them to see and show them what he had.

According to the scoring they did, on a scale of 1-10 with 10 being the highest and showing how severely he displayed Autism. He scored a 1. They said the difficulties they showed him manifest were most likely behavioral and could be corrected with appropriate intervention.

They were very considerate. They were not the least bit judgmental and never indicated his behavioral issues were the result of bad parenting. They gave us documentation on a program in our area which could continue to monitor Tot and possibly get us services based on the Speech Delay. Again, the quality of what they did and how they did it, were honestly the most humane experience I’ve had in this 8th yearr of being in SC.

We packed up the Tot, got the Tot and headed home.

Tot on Table

It’s 8:09 a.m. and I’ve been up since 4:30 ish…wifey and I are taking Tantrum Tot to Charleston, SC (a 3 hour trip) to be seen two doctors, a pediatrician and a developmental specialist something or other. Two doctors, 6 hours of evaluations, and the Tantrum Tot.

Wish us luck! I’ll post details later.

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Today Tantrum Tot refused to go to day care. This was surprising to his mother because he has reached the point where he will not only happily walk into the daycare on his own, but  will also turn around and wave to you after you walk back to the door! (Unless of course it’s me dropping him off, then he screams bloody murder).

Also,when we pick him up at the end of the day, he no longer bursts into tears, but rather will run to us, hug us, go get his bag and wave goodbye to every one!

Today,after being dropped off at  his grandmother’s house for an hour, wifey picked him up, brought him home and reported that he was so well behaved all day she couldn’t believe it.

When I walked in after work, he jumped off the couch and yelled DADDY!!!! This of course made my day. Since coming home he has been very mellow and surprisingly compliant. He sat at the table with his mother and I and devoured some chicken…then while his mother, brother and I were watching Big Bang Theory, he sat in the middle of the floor with his toys and quietly played for almost two hours!!!

That is when I took the pic that’s on the top of this page I wish I was able to get a pic of when he was hugging his little robot to his chest.

He is now laying down on my side of our bed watching Thomas the Train (what a Good awful boring show), on Netflix, hopefully on his way to Pillow. Street and Quilt Avenue.

His behavior is slightly reminiscent of that old movie Invasion of the Body Snatchers. I think I’ll check under the beds for pods or something!

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